Note: Another gift from Kevin…I (Kevin’s mom) stumbled across this chapter stored on another computer that Kevin used late last fall.  The date stamp on this document was October 27, 2011.  This is pure Kevin…Enjoy!

 

Why ask why?

 

            My mom always used to say this as a comeback whenever I asked why, which was most likely upwards of five times a day when I was younger. It was my favorite word, and became an integral part of my approach to life. It was what fueled my fascination with magnets, and led to my “invention” of the magnetic engine. It’s also the same question that fueled the Renaissance, the Industrial Revolution, the Digital Age, and is the driving force behind every inventor that has ever lived. How amazing that such a simple question can lead to so many new and wonderful things.

            As far as I can remember, the concept of “why” has always been ingrained in my style of thinking. I can’t count the number of things I’ve taken apart, just to figure out how they work. Most of them worked when I put them back together, though from time to time I did find an extra screw or two left over (and could never quite find where they came from). It’s been a useful skill, allowing me to replace the battery on my iPod in college without having to pay Apple some ridiculous fee just to pry open my iPod, disconnect one cable, reconnect another, and pop it all back together.

            I remember driving home from high school one day, and I noticed that my dashboard and radio lights were getting dim. I figured my battery was running down, and prayed I’d make it home. The last street to my house was uphill, and I remember thinking “If I stall, there’s no way I can push this home myself!” Thankfully, the car barely made it into the driveway. After jump-starting the car and charging the battery using our other car, I drove to the gas station to test my theory that the alternator was bad. One simple test later, and the mechanic agreed with me. I decided to make an adventure out of the situation (since the alternator was conveniently positioned on the top of the engine), and bought a new alternator from AutoZone. An hour of work and $160 later, my car was back to normal. The mechanic at the gas station had quoted me around $300 to do the same thing. I was quite satisfied with myself.

            Taking things apart and reassembling them to figure out how they work is something I’ve always found fun – and quite useful. But asking myself “why” has been just as (if not more) important. Humans are complex beings, with many thoughts, feelings and beliefs. We can understand more than just what we see.  We can understand the how and the why of different things. We can understand what causes things to happen or people to take certain actions. This, I believe, is what separates us from the rest of the animal kingdom.

            I had to do a group project during my senior year of high school where we were told to examine what it means to be human. We came up with the concept of choice – being able to choose what actions to take, instead of acting on instinct alone.  Our project ended up being a half hour long movie about two CIA agents, one who was the product of a secret project to create the perfect assassin. They were both sent after a computer hacker who had stumbled upon the project files, and represented a security threat. The dichotomy of the two – one who had lost his ability to choose, and could only follow orders – culminated in a scene at the end of the movie where the brainwashed agent and the human agent had each other at gunpoint. The human agent kept telling the assassin that he had a choice; he didn’t have to kill the hacker. The assassin’s response was simple – there was no choice, he had his orders.

            “The Bourne Ultimatum” came out the following year, and the ending scene was almost identical to our movie. Bourne is on a rooftop, face to face with an agent with a handgun, who has been ordered to kill him. Bourne asks the man “Do you even know why you’re supposed to kill me?” This simple question causes the man to stop to think for a second, allowing Bourne to jump off the roof of the building and escape to freedom.

 

Looking Inside

 

            To be human is to understand the concept of “why”. We are able to look at things we encounter, and ask ourselves how they work and why they work the way they do. We are able to ask others why they believe something. But more importantly, we are able to ask ourselves the same question.

            We live in a world full of opinions on display. The newspapers of today contain Letters to the Editor, words that express people’s opinions on many different subjects. TV channels constantly spew news clips of politicians saying something controversial – something meant to draw an emotional response. And, inevitably, we encounter people who have differing opinions from our own. More often than not, this leads to some sort of verbal disagreement over a given subject. And so we argue.

            But how can one argue a viewpoint when they don’t know why they hold that opinion? Is it possible to have an opinion without having a reason to back it up?

            I suppose it is possible, and I have encountered people like this. But I don’t understand them. Our opinions and beliefs are among the things we hold dearest and the things we defend the greatest, much like loved ones. But our loved ones become so close because we get to know them so well. How can you defend something that you don’t even know or understand?

            To me, the answer is simple – you don’t. I value my beliefs and opinions, but I also stop to think about why I hold the views that I do. To me, asking myself why I hold my views allows me to examine them and be comfortable with them. I can truly embrace my beliefs because I know that I believe in them for the right reasons, and not just because someone I know holds the same belief.

Advertisements

Preface: I (Diane, Kevin’s mom) found this on Kevin’s iPad last night.  He had started to write his autobiography last September while in Houston, after a failed clinical trial and a last-ditch round of chemo to abate his leukemia enough so that he could return home to DeKalb.  He developed an outline for his autobiography but this is the only chapter he wrote, and it is just a rough draft. 

Chapter 1

My name is Kevin Ballantine. To say that I am anything but normal would be quite an understatement.

I was never an easy child (my favorite word growing up was “Why”), and I’ve been told that whenever I got an idea in my head I was impossible to stop. If I wanted to go climb a tree, nothing short of my parents physically holding me back was going to stop me from reaching at least the first few branches and grinning back down, full of the joy that comes with achieving a goal. My mind was constantly running at a hundred miles a minute, and I came up with at least a few zany ideas.

One of these was an engine powered completely by magnets.

I was in fifth grade at the time, and was obsessed with this engine for a few years. I even built the frame of a flying vehicle that would be powered by this motor. I built it in the basement of my house, just like Gibbs from NCIS, until my parents decided that me accidentally spray painting the basement floor wasn’t the greatest thing in the world. The idea as it first came to me would have never worked, thanks to the laws of perpetual motion, but it did evolve. I made changes in my mind, then gradually forgot about it until my high school physics class covered the electric motor. I realized that what I had eventually come up with (and not bothered to pursue) was just a variant of the electric motor.

This story highlights another of my traits as a kid – my short attention span. Most of my ideas fizzled and died simply because I moved on to other ideas. But that was my style – pour myself into something for a short period of time, maybe finish it, and then move on to the next project of the moment.

This style continued into my college years at Cornell. I entered my freshman year as a Mechanical Engineering major, but decided that while I liked the classes I wasn’t really interested in the career paths that would be open to me. So I decided to switch majors, but wasn’t entirely sure what major would suit me best. I had worked on quite a few movie projects in high school, and was always the one who did all the editing work on the computer. I absolutely loved editing, but regardless I enjoyed every part of the film-making process. I had been involved in everything from writing my own script to shooting scenes to actually acting (although I didn’t think I was very good at acting and was always self conscious about it). But then I looked at what it would take to make it in the film industry, and I’d have to move to the west coast and stumble upon an incredible amount of luck in order to be successful. Neither of those seemed feasible to me, so I looked elsewhere.

In character with my high energy personality, I have always had a love of severe weather. On multiple occasions I’ve driven out into the country, parked in the edge of a cornfield, and watched the lightning flash all around me. I haven’t had the chance to go tornado chasing yet, but it is on my list of things to do before I die. All of this points to pursuing a weather related career, so I decided to try and switch to meteorology. This required switching colleges within Cornell, so I had to take business classes along with meteorology classes. I failed them miserably, and was denied admission to the meteorology major.

Back to square one.

Since I wasn’t allowed to switch, I was back in the engineering college and the closest thing to meteorology was a major called science of earth systems. The first required course was all about the earth, and I dropped it about a month into it. I couldn’t stand doing labs where we scratched rocks on some special surface to determine how hard they were – and rate their hardness on a scale of one to ten. That, to me, was just about the epitome of boring. So I went back to mechanical engineering with a renewed passion. And I actually enjoyed the classes! But I didn’t do that well, and was still unsure at the end of that semester. So I decided the best thing to do was to take some time off and figure out what I wanted instead of wasting money at one of the most expensive schools in the country.

But first I had to fulfill a commitment to the Cornell Drumline. I’d been elected section leader for the 2008 calendar year, and decided to take a break after the spring 2008 semester. I stayed around for fall 2008, living in my fraternity (which is another story, revolving around my ability to rationalize things) and working as a delivery driver for a Thai restaurant. I have never seen another place that delivers Thai food, save for that restaurant in Ithaca, NY.

After serving as section leader for the drumline, I headed home to DeKalb to attend Northern Illinois University for a semester. At this point I was trying to decide between Government and Chemistry as possible majors. I’ve always been passionate about politics (a topic that will be covered later in this book), and chemistry is in my blood. My dad and his dad both have Ph.D.s in Chemistry, and it’s the one subject I’ve been drawn to most, and have (for the most part) understood the most as well.

About a month into that semester, I was diagnosed with Acute Myeloid Leukemia. That began a journey that I am still on today, and a story that I will get to at a later point. This is still the story of who I am. That is a part of who I am, but in a different way. Part way through my journey, I returned to Cornell, with a final major in mind. I intended to major in Chemistry, and head down the path of Education – I want to be a high school chemistry teacher. I still have that goal, and if God brings me through this I intend to pursue that degree at NIU.

When I was a kid, I attended “smart camp” at Northwestern University during the summers following sixth through ninth grade. It was called the Center for Talent Development, and the campers lived in the dorms for three weeks and attended classes from 8:30am until 2:30pm Monday through Friday. I made many friends that I still have today, and memories that I will never forget.

It was there that I first discovered the awesomeness that is Ultimate Frisbee. I remembered this while searching for jobs for the summer of 2008, and was hired to be a Residential Assistant for both sessions. I lived in the dorms and had my own group of students, and absolutely loved the experience. I discovered I loved working with kids, and during my soul searching in the hospital I remembered this fact – which led to my realization that I wanted to be a teacher.

Most of my teaching experience so far, however, has been limited to my brother and sister. Based on my experiences with them I will definitely need to take a few classes in teaching, because I need to refine my techniques (not to mention improve my patience by a decent amount).

My brother and sister are both adopted from India, which means I’ve had quite an interesting childhood. Indian culture was always part of our lives, especially Indian cuisine – which I must say is absolutely amazing if you’re willing to put in the time to make it. This has led to my belief that food isn’t worth eating unless it has flavor. I met a friend in college who would only eat pasta if it just had butter on it, nothing more. No tomato sauce, no Alfredo sauce, just butter. I couldn’t grasp that concept. Flavors are what make a food great, at least in my opinion, and without them it’s just not worth bothering.

Apart from the culture and cuisine, my family also traveled to India twice – once to pick up my sister in when I was thirteen, and then again when I was nineteen. Taking a tour of India is something that changes your life, no matter what age or stage you’re at. I remember watching an episode of The Amazing Race (the only episode I’ve ever bothered watching) where the contestants had to travel to the Amber Palace in Jaipur, India. I’d been there myself, so I decided to watch. Two of the contestants were former cheerleaders for the Dallas Cowboys, and during their drive through the city of Jaipur they both started crying from the sheer poverty that was present everywhere they looked. That is exactly what I experienced (minus the tears), and the effect stayed with me as I went through my teenage years, learning about who I was and shaping who I wanted to be. I learned a lot about what was truly important, and what didn’t matter. I’ll touch more on that later in the book.

The last part of who I am is what led me to write this book – my battle with leukemia.

As I mentioned before, I was diagnosed about a month into my spring semester at NIU in 2009. I had been experiencing a strange sensation in the back of my head, basically at the base of my skull. Whenever I ran up stairs, I could feel my pulse pounding at the base of my skull for a minute or two afterwards. This had been going on since November or December of 2008, but it was progressively getting worse. I went to see a doctor in January, and had a CT scan done of my head.

Nothing abnormal showed up, so they put my on an antibiotic and sent me home. Things only got worse, and I started to feel fatigued after riding my bike to and from class. It got to the point where I had to take a nap after class every day. I thought that maybe I just wasn’t in shape anymore, so I started swimming at the YMCA. After swimming a mile per workout, three times a week, I was still feeling tired after class – so I went back to the doctor. When I mentioned the fatigue, the doctor ordered a Complete Blood Count (also known as a CBC), which I had drawn before I left for home. The clinic is about a five minute drive from my house, but by the time I pulled into my driveway the doctor was already on the phone with my mom. Two of my counts were dangerously low – my hemoglobin, which carries oxygen to the muscles and brain, was at 6.6 instead of the normal range of 12-18, and the platelets, which are what help the blood clot, were at 6,000 when they should normally be between 150,000 and 450,000. In other words, the doctors had no clue how I was riding my bike to class, functioning normally, swimming a mile, and not bleeding internally.

I was admitted to Kishwaukee Community Hospital, which at that point was only a year or so old at most. I have to say, in terms of amenities it remains the nicest hospital I’ve ever stayed in. However, it’s not a high-powered cancer research center, so I had to go somewhere else to get treated. The next evening we left for the University of Wisconsin Madison Hospital, where I spent almost a month going through my first experience with chemo. Before I went into the hospital, I had medium length curly hair. About ten days after starting the chemo, the hair began to fall out. I had never completely shaved my head up ’til that point, even during my years as a swimmer. A few days later, my life changed. Shaving your head is one sort of life change, but that grows back eventually. In the beginning we had been told that I probably had a type of leukemia that was easy to cure.

Let me give a little background info about leukemia. There are four types, and two different categories. There are chronic and acute leukemias, with chronic leukemias being slow growing and much more easily treatable. Acute leukemias, like mine, come on fast and are harder to treat. Within those categories, there are two types – lymphocytic and myeloid. Put it all together, and the four types are CLL, CML, ALL and AML. I have AML. But then within AML (Acute Myeloid Leukemia) there are many different types of genetic malformations, which are referred to as having different cytogenetics.

Originally, we were told that I had good cytogenetics, meaning that most likely I’d have to go through a few more rounds of “consolidation chemo”, but after that I’d be pretty much good to go. My odds of relapsing would be pretty low. Then the truth came out. I was not only NOT in the good category, I was well into the poor cytogenetics category. I had a genetic malformation called t(6,11), which is a subset of 11q23, meaning that the 6th and 11th gene had gotten switched on the 23rd chromosome of some of the stem cells in my bone marrow. This resulted in the stem cells producing immature cells that, instead of maturing into healthy red cells, white cells, or platelets, stayed in the immature phase. The worst part is that because they never mature, they don’t die – instead they keep multiplying and taking up space in the bone marrow, forcing out all the normal cells. This is what caused my counts to drop.

Back to my story – when the doctors told me exactly how bad my cytogenetics were, the doctor was quite blunt. He said I had a fifty percent chance of being alive in either two years or five, I can’t remember anymore (I blame the chemo).

Being told something like that really wakes you up. It makes you examine what you really want to do with your life, not just long term goals but also short term things. It also opens your eyes to what is truly important. Illegal immigrants sneaking over the border so they can work for less than minimum wage, picking tomatoes in the hot sun with no benefits for twelve hours a day? That’s not worth getting upset over, not while kids are starving in Africa, or better yet – kids are starving in America.

As I sit here writing this, I have been through ten rounds of chemo, and am in the middle of my eleventh at the moment. I don’t have any promising treatments lined up, and the current chemo won’t work forever (if it’s even working at all). I don’t know how much time I have left, but I believe that I should share what I believe with others. If even a few people take the words in this book to heart, if just a handful try to live as I have, then maybe the world will be a better place.

Any time I think about dying soon, any time I think about succumbing to the leukemia because there is nothing left to do, I have one fear. I feel like I have the potential to make a difference in the world, if only I’m given enough time. My fear is that I won’t have nearly enough time to make that difference. I hope that this book will allow me to live on in some way, continuing to make a difference in the world, however small that difference may be.

I want to start a movement.

I was driving home from the airport yesterday, listening to Schooner Fare. For those of you who don’t know, Schooner Fare is a semi-Irish folk group that has been a family tradition since probably before I was born. Listening to them really makes me feel at home, no matter where I am.

One of their songs came on, and I couldn’t help but notice the similarities between the song and today’s events. The song is called “We the People”, and I’ll post the lyrics here (hopefully I’ll be able to put it up on youtube soon so you can hear it too.)

WE THE PEOPLE
Words and Music by Steve Romanoff

We the people, hand in hand,
We, the people, understand,
That there’s an answer, there’s a way,
We, the people, have to say,
So, send the orders to prepare,
We, the people, do declare,
Send the good news, send the word,
We, the people, will be heard,
We, the people, everywhere.

There’s a message in the air,
And it’s a’movin’ across the land,
If you listen you can hear it well, my friend,
we know the time has come
To take our heads out of the sand,
‘Cause if we don’t the chance might never come again,
The future is in reason,
Not in building ways of war,
And the time has come for reason to be heard,
The purpose of the people
Is what this declaration’s for,
And it’s why our fathers told us word for word…

We won’t accept excuses,
And we won’t accept the lies,
Of those who’d lead our nations into hell,
It’s time to call their bluff,
To say to them, enough’s enough,
It’s time we all could hear the tolling of the bell,
It’s time to feed the hungry,
And it’s time to heal the pain,
And it’s time to beat our weapons into plows,
It’s time to hear the voices that have risen once again,
It’s the wisdom of the people clear and loud,
Singing proud…

Our government is broken. There’s no denying it. It’s time for all of us to pull our heads out of the sand, because there’s only one way this is going to change. We live in an era where the media gives the microphone to those who scream the loudest, not those who speak with the most sense. It’s time to raise our voices as one, calling for common sense to be the basis of any legitimate campaign and the core value of every politician. We should be willing to accept that no human is perfect, and therefore no government will ever be perfect – and by extension no solution is going to be perfect simply because it comes from human minds. But we can find a good solution if we work together. Everyone asks “What did the Framers intend”? I think that no matter what their specific views would have been on any given topic, we can all agree that they intended us to work together. They believed in compromise, not pig-headed stubbornness.

I want to start a movement, but I don’t know where to begin. Call it the “We the People” movement, or maybe “The Common Sense Movement, but something needs to be done. We may not have another chance like this to change the system and save the future of our nation.

When we’re faced with candidates who don’t believe in changing things and would rather tear the whole structure down, good and bad, we need to do something.

When we’re faced with Congressmen and women who make promises before they’re even elected, regardless of the fact that they might need to break that promise in order to save the nation from disaster, we need to do something.

When our leaders refuse to pay for the things they want, we need to do something.

When our leaders believe that we shouldn’t have to pay for what we’ve already used, we need to do something.

When our leaders refuse to take responsibility for their actions, we need to do something.

When our leaders care more about what they’re seen doing than what they actually do, we need to do something.

When government becomes bed of hypocrisy, we need to do something.

When those in Congress lie when they say that “The American People got what they wanted”, we need to do something.

The time has come to take our heads out of the sand and say “Enough’s enough”. Let’s do something. Call your congressman or woman, ask them to start exercising common sense and decency, hold them accountable for their actions, voice your opinions, tell them we got ourselves into this mess and it is our responsibility to get ourselves out of it. We have to pay for our mistakes, even if that means raising revenues for the time being. It’s time to do the right thing. And time to make sure those we elected to do the right thing remember why they were elected.

There.   I said it.    And it’s something that’s been bugging me for a long time.

Our insurance system is broken.   People like myself, who have pre-existing conditions, will be unable to find insurance (except at the expense of bankruptcy) as soon as we leave our parents’ coverage.   Does anyone care what happens to us?   I think that deep down, every single American cares in some way.   No one thinks that people should die when someone else can save them.

And yet the United States House of Representatives just voted to repeal the health care bill.   I know that the repeal vote won’t pass the Senate, so I’m not really worried about losing my coverage.   What I am worried about is those who put principle above logic, and stand behind stupid campaign promises even when there is an obviously better solution (or even make those promises in the first place).

Let’s look at the auto industry.   Every so often, companies introduce new models, or redesign their existing models.   How many smart buyers go out and buy that first year product?   Not many.   And for good reason – it hasn’t been tested in the real world, and it’s bound to have flaws.   So what do they do instead?   They wait a year or two until the flaws have been ironed out, as updated models are released.

Case in point – most people who have owned or considered buying a Subaru from the late 90s, and even into the early-mid 2000s know of the innate flaws in the design of the head gasket, which cause it to leak around 100,000 miles.   So do people buy those?   Not if they can afford one of the newer models (2005 on), which have solved the head gasket problem.

So why are we going back to the drawing board again?   Why not pick and choose the good things in this bill, while replacing or removing the bad?   This would cause far less drama, and I don’t think anyone would argue that it would create a worse situation than we’re in now.

Because, like I said, no one believes that a person who needs treatment to survive should ever be left to die.

And that’s what should matter to us, not sticking to our word even though we know it’s wrong.

I know that some people out there may argue that the reason Republicans are voting for this bill is to save face, because they know it won’t pass.   But I’d argue this – why waste precious legislative time?   Why not just spend that time working on refining the bill?   Better yet, why not admit that while the bill has some positives – like protecting those with pre-existing conditions, it does need to be refined?   Publicly come together and admit that!   That way you look like humans with hearts, instead of robots with botox – showing no emotion, save anger.

No sane artist scraps an entire masterpiece because there are things that he/she wants to repaint.   Instead, they simply apply a second coat.   And that’s exactly what we should do here.

So Republicans and Democrats alike – get out your paintbrushes, not your torches and pitchforks.

Do politicians have a conscience?   Or are they just biological systems with too much ego and no sense of consequence or repercussion (and apparently no ears to hear what the American People want)?

Republicans in the Senate have agreed that they will block passage of every bill until the the tax cuts have been extended for EVERYONE. Not just those who make less than $250k, or even $1 million.   Everyone.   Mitch McConnell, the Senate Republican leader said that all Republicans and even some Democrats agree that taxes shouldn’t be raised on anyone.    This is in contrast with a CBS survey in which only 26% of Americans say the same thing.   And 53% say that taxes should only be extended for those  making less than $250k.

It’s one thing to go against the wishes of the American people, for the sole purpose of making a political point.   It’s another to agree to veto ALL BILLS, including some extremely important bills, for this same reason.

For example – Russian Prime Minister Vladimir Putin has publicly said that unless the new START (STrategic Arms Reduction Treaty) bill is passed, Russia will be forced to build up their nuclear arsenal again.   Aren’t the Republicans all about national security?   This seems like a national security no-brainer to me – work towards eliminating nuclear weapons.

And what about the unemployed?   What about the very people who need the economy to turn around, need jobs, and need help until those jobs appear?   Another item that needs IMMEDIATE attention is unemployment benefits, which have just expired.   Sure, maybe tax cuts for all will make the economy rebound faster, but maybe they won’t.   And in the meantime, what are the families of all those unemployed Americans supposed to do?   Spend their time trying to find work, or spend their time trying to find homeless shelters?

And the Democrats are not willing to call the Republicans’ bluff.   They are not yelling very loudly, protesting this obvious stupidity and injustice.   Did we elect a bunch of men willing to do what is right?   Or a bunch of cats who run the other way when something scares them?

This honestly seems like something a 5-year old could figure out – help people until they can stand on their own two feet, and name as idiots those who are being dumb..   But then again, the way Congress seems to be acting makes me think that they have the maturity of a bunch of three year olds.   So maybe there’s our answer – the people we elected just aren’t mature enough to handle the responsibility of managing our nation, because they’re too busy making sure no one pops the pretty balloon that is their over sized ego.

And yet we keep electing these idiots.   When is this going to change?   When are we going to take responsibility for the power given to us – the right to vote?   When are we going to research the candidates, and hold them truly accountable for their actions?   When are we going to stop watching the news in disgust, and start calling our elected officials to ask what the hell is wrong with them? And what will happen if we don’t?

 

Today, I find myself sad to be called an American.

I’ve fought a tough battle to get to where I am today, and anyone who knows my story would say that every day I get to spend on this Earth is a blessing.   And they will acknowledge the fact that I’ve now survived for almost two years since I was diagnosed, thanks to a matched unrelated donor stem cell transplant.   The same type of transplant that the Arizona state legislature was told were “totally ineffective” (source).   And because of that blatant misinformation, and facing a $1.5 billion dollar deficit, the legislature decided that part of a possible solution would be to cut funding to some state-funded lung, heart, liver, and stem cell transplants.

Really?   We’re now sentencing people to death because the state can’t balance its budget?   Now who’s fault is that, and let’s be honest here.   It may not rest on the freshman legislators, but one can bet that at least a majority of those who serve now also served when the state went into the red.   And more importantly, the blame certainly, absolutely, undoubtedly does NOT fall on those waiting for transplants.

Let’s take a look at the breakdown of votes.   Here is a press release from the AZ Democrats (1. it’s posted on the azleg.gov website, and 2. the part I’m concerned with is the vote tally links at the bottom.   So don’t accuse me of using biased sources, please).   In both the AZ House and Senate, all Democrats voted against this budget.   And in both the AZ House and Senate, all but one Republican voted for it.

Is this the same party that was crying wolf over mythical “death panels” that would be supposedly created by Obamacare?   The same party that supports Sarah Palin and Newt Gingrich, and (at least) sometimes listens to Rush Limbaugh and Glenn Beck, all of whom have spoken against these “death panels”? Yes, yes it is.

As my girlfriend aptly puts it – “I hate this country sometimes.”

How much longer can we afford to stand by and let hypocritical, corrupt people ruin what was once a shining pillar of hope and freedom?   I don’t know, and I certainly don’t want to find out.

(For the record, I think that Democrats can be just as corrupt as Republicans.   No matter what your party loyalty, do what you do for the right reasons, not to smear the opposition.   Represent the people who elected you, don’t spit on them, step on them, and certainly don’t kill them.   You should not run over the same promises you run on, or the people you run for.   Both parties are guilty.   Get rid of the two party system, and maybe we’ll get somewhere.   But either way, it’s broken.  And politics is broken, and going to tear this country apart some day.   Make sure you take the antidote – practice common sense, use your head and not your heart.   Do what you know to be right, not just what someone says is right.)

Preface: I had a bone marrow biopsy over spring break that showed a few abnormal cells in my bone marrow.   It could have been lab error, so I flew home in late April to have a repeat procedure.   This one was much more clear – the leukemia was back.   We explored a few different options, including going straight into induction chemo and then to a transplant, or trying a new drug called Azacitidine (followed by a donor lymphocyte infusion). Unfortunately, we could only proceed to the DLI if the Azacitidine worked, and brought the leukemia cells under control.   After two cycles, all indications were that it wasn’t working.   On to plan B –  the induction chemo and transplant.   I’m currently at Kishwaukee Hospital, which I’ve written about before, and will be transferring to Mitchell Hospital at University of Chicago tomorrow.   I’ve already had the chemo, but we want to be on the safe side when it comes to possible infections and side effects associated with chemo (and go to a hospital that has staff on call 24/7 for any possible emergencies).

From the beginning, and especially more recently while breaking the recent news to friends, I’ve heard the same question repeated over and over.   At first I didn’t really know how to answer, but then I thought harder about what I can make out of this situation.

“Is there anything I can do for you?”

At first, I simply said thanks, but I can’t think of anything.   But then I came up with a different, slightly longer answer.

Remember that life is fleeting, and there are more important things than grudges or ill wishes.   Underneath our different skin colors, yarmulkes, head scarves, or crucifix necklaces, we’re still the same people.   We still want the same thing – for people to be nice to us.   All I ask of those who want to help me is this – treat your strangers as you would your best friends.   For all those who persecute others in the name of Jesus – remember what Jesus himself did.   He went out of his way to help those society refused to accept.   And remember – let he who is without sin cast the first stone.   For all those who instill terror in others in the name of Allah – I find it hard to believe that your path to paradise is paved with the bones of innocent non-believers.   If yours is truly the right path, let the rest of us rot in hell for eternity.   But in the meantime, let us improve the lives of others here on this Earth, because if we don’t then what kind of world are we leaving behind for those you hope to convert?   Do you really want to convert those who believe only in violence instead of helping the poor and needy of the world?

We are all forced to share the same planet it, like it or not.   And we are ALL responsible for that planet, for the sake of ourselves and our children.   Here we sit bickering about things like illegal aliens flowing into our country (and let’s face it – how many of us really want to do all those minimum-wage jobs that they fill?), while we have to spend more and more money cleaning up all these environmental disasters.   Some, like the BP spill, are caused by our infatuation with money (I hesitate to call it love, because that implies a healthy relationship, which this clearly is not).   Others, like Katrina, flooding across the US, more severe weather, and heat waves that drive up electrical bills, are most likely the result of our failure to pay any attention to “climate change”.  [I hesitate to call it global warming, because while overall the planet may be warming, its effects are less than warm in some places like DC, which received over 5 feet of snow in one month].

And then there’s the war(s).   We have pumped over 1 TRILLION dollars into fighting a war in Iraq and Afghanistan in the past 10 years, and to what end?   Democracy is a noble cause, but in reality I believe it’s more about egos.   We were insulted and must fight back.   And now that we’re in a war, we can’t back out until we win.   But we can’t always be the world police, and we must remember that.   The world civilization survived for thousands of years without the United States acting as the highest authority, and I’m pretty sure that it can continue to do so.   If we’re asked for help, sure we can respond.   But we don’t need to save every country that is oppressing its people.   And if we took that $1,000,000,000,000 (1 trillion) and pumped it back into the economy (or maybe something like MEDICAL RESEARCH), we might actually get some return on it (instead of access to oil that we need to be weaned off of anyway).

So if you want to do something for me, here’s what you can do.   Be nice to those you encounter, don’t hold grudges, and please – hold your government accountable.   Get involved, make your voice heard.   Don’t just let these egotistical people trample on your wants, needs, and beliefs simply because they want to remain in office (but before you voice your beliefs, be sure about why you believe them – don’t just believe something because you’re told to, research it yourself and come to your own conclusions.   Independent thought is the backbone of an intelligent society, and is what separates us from the mob mentality).

“If a nation expects to be ignorant and free, in a state of civilization, it expects what never was and never will be.” – Thomas Jefferson

Life is not measured in days or months, but rather in laughter and love.

That being said, there’s nothing wrong with celebrating the years we spend contributing to this wonderful place called Earth.   One year ago, I was exploring the Hematology/Oncology ward at University of Wisconsin, and preparing for whatever life was about to throw at me.   One year ago to the day (and I can still picture this moment in my head) I asked a nurse what was on the agenda for tomorrow.   Her nonchalant response – “Oh, you’re starting chemo tomorrow!” – will always be in my head, and the feeling of fear, excitement and uncertainty will always be in my heart.

In some ways, things have completely changed since that day.   But in some ways, nothing has.   But really, things then were no different than for anyone else – the difference is that I’m now intensely aware of the fact that nothing is certain in life.   But that’s ok, because that fact is actually the only absolute certainty – one that should drive us to experience every moment to the fullest, never be afraid to take a risk instead of always wishing we had done so, and be thankful for every breath we take.

One year after those first few life-changing days, I’m back to where I wanted to be so long ago.   I’m a student at Cornell, and I have direction (specifically, a degree in chemistry followed by a secondary education teacher’s certification).   My first big exam of the semester was last night (Organic Chem II).   In celebration, I’m not doing homework tonight, a task that’s actually harder than it sounds when I’m the only one in my apartment.   After defaulting to Facebook as a means of wasting time, I came across something unusual.   While bouncing around from page to page, I ended up on my grandfather’s Facebook page (what a wonderful thing for an octogenarian).   I left a quick note, then scrolled down to see if anything interesting had been posted on his wall.   Lo and behold, a few posts down was something I had written on June 8th.

June was a rough month for me, with the transplant and all.   However, I was (un)fortunate enough to be on a medication that gave me permanent amnesia – the first week in the hospital is apparently a week I will never remember.   I say fortunate and unfortunate, because (obviously) it’s nice to not remember the side effects of the chemo, but at the same time I have no memory of posting this statement on my grandfather’s wall.

No matter how much intelligence you have, a battle can not be waged, a war won without persistence and hope.

Somewhere in the haze of chemotherapy and amnesia-inducing drugs, I came out with that coherent (and somewhat profound) statement.   This past year has been defined by many things, but one moment stands out – a doctor telling me that I had a 50% chance of being alive in 5 years.   Flip a coin – heads I live, tails I meet my maker.   But that’s talking statistics, a science that cannot be applied to survivors.   I am a survivor to the core, and always will be.   Whatever wars I wage, be they of my own making or not, I will be armed.   Hope in one hand, and persistence in the other.

So far, I’m winning.   Even on my down days, I will never give up.   There are so many things in my life worth fighting for – things worth putting up with anything for.   First and foremost on this list is my family.

My family, both directly and indirectly, has made me who I am.   I owe so much to them.   Cancer was never a scary word for me, because I’d seen my mom beat it.   Twice.   And through it all, I always knew they were there, cheering me on.   They taught me never to give up on something I wanted – which, in this case, was my life.   I have never given up that battle, and I know I never will.   My hope and my persistence come from them.

Second – I have to thank my friends.   I never knew how many I had until they were all there, wishing me well.   If hope is a gun, they were my powder-monkeys, providing me with endless ammunition.   I have many stories, but one that sticks out is my fraternity brothers.   What some may see as a house of stereotypical college alcoholics turned out to be so much more.   Those who I have the privilege of calling my brothers did something amazing – they shaved their heads for me.   And in the process, they raised over $1200 for the Leukemia and Lymphoma Society.   And here’s the kicker – I didn’t know half the guys who shaved their heads.   Which brings me to the next thing I’m thankful for – strangers.

At least 15 of the new members – guys I had never met – shaved their heads for me.   It may have been a simple action, but it still makes me tear up sometimes.   And that’s just one example of the kindness of complete strangers.   All over New England (or so I’ve been told) complete strangers were praying for my well-being and swift recovery.   I have no doubt that this simple action helped me to where I am now.   To every single one of you, those that I have never met, thank you.

Friends, family, and strangers – thank you.   I can never say it enough.   Material things are nothing next to those who give us the hope and the strength to go on.   You are the ones who affirm my belief that humanity has the capacity for extraordinary acts of kindness.   Don’t ever stop being amazing.

One year has passed.   I’m sure it won’t be the only year, and I have a sneaking suspicion it’s one of many still to come.

I’d like to keep writing in here, but I’m not making any promises.   Time and inspiration permitting, I’ll be back – hopefully with new subjects as well.   Cancer gets boring after a while.

Whose woods these are I think I know.
His house is in the village, though;
He will not see me stopping here
To watch his woods fill up with snow.

My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.

He gives his harness bells a shake
To ask if there is some mistake.
The only other sound’s the sweep
Of easy wind and downy flake.

The woods are lovely, dark, and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

My dad gave me a collection of Robert Frost poems for my birthday this year.    I’ve read through maybe half of them so far, but Stopping By Woods on a Snowy Eve seems too good an inspiration to pass by without comment.   This comes as no surprise, seeing as I’ve grown up with this poem in many ways (my teddy bear is named Miles because of this poem, and both my mother and I share a love of the sights and sounds of the year’s first true snowfall).

Today marks the eleven week anniversary of my transplant, and 190 days since I was diagnosed back in February.   All indications are that I’m well along the path back to normal life.   And I know I must keep climbing that path, because I have too many promises to keep – both to myself and to others.   And Lord knows the road will rise up to meet me for many miles yet.

These past 6 months have been, in some ways, like the darkest evening of the year.   But even in the heart of winter, through the cold and wind, there is still beauty to be found.   If one can get past the bone-chilling cold of chemotherapy and occasional biting wind of neutropenia, then the beauty of falling snow begins to shine through.

Sure, I’m halfway through college.   Not exactly anywhere near any of the usual farmhouses that mark the usual turning points in our lives – points at which we can take a quick break from life without missing a beat – but if I stop at a farmhouse, I gain the warmth of a fire at the expense of experiencing the magical snowfall.

For me, these past months have brought the cold and the wind, but also the peaceful sound of easy wind and downy flake.   That sound – in the form of love from all sides – has made this unexpected stop more enriching than any of the farmhouses I’ve stopped at so far.

As I resume my journey, counting the miles behind me, I hope to find the beauty in any situation.   I believe it can be found, as long as the cold can be ignored.   Though I pray my life is free from metaphorical stops like this, I look forward to enjoying as many (literal) peaceful snowfalls as I can before my journey’s end.

On a side note – I’m doing better now (at least in terms of the leg and the headaches) than I have been in past days.   I’m not sure if this is due to me actually getting better, or if I discovered a magical cure last night in the form of 16oz cans of AMP (Mountain Dew’s energy drink).   I’ll try the AMP again today, but this time I’ll have it around 4pm, rather than 9.   Sleepless nights aren’t much fun, even when you’re not woken up by your brother’s alarm at 5:45am.   Really, Keerti?   School doesn’t start til 7:45.   What would possess you to get up that early?

I discovered the medical name for a pinched sciatic nerve a few days ago.   And it’s actually quite amusing, since it’s probably more likely to pass as a science fiction movie title than a medical condition.

Sciatica.   Really.   I wonder if Arthur C. Clarke had anything to do with thinking up that name.

Building websites is fun, and so is learning new things.

But what I’m doing right now is beyond learning new things.   I’m currently in the process of creating an edit page for the drumline’s website (percussion.bigredbands.org).   In the three days I’ve been working on it, I’ve gotten maybe half of what I want done.   I’ve learned parts of two new programming languages, and new applications for a third I already knew.   I think that’s the equivalent of at least four weeks of web design class.

So far, the only way to do what I want is to use all of the different languages at the same time.   This leads to (for those who understand) using PHP to access a MySQL database, take that data, and build a custom Javascript to modify an existing HTML page.   For those who are lost, that’s like me trying to translate something into spanish, then spanish to german, then finally another translation back to english – oh, and I have to make sure that the same thing I intend to say is what comes out at the end.   Not the general idea, but the exact idea.

Frustrating, but for me (a nerd of sorts) it’s been quite a fun experience.

In other news – the doctors continue to say how well I’m doing, despite a few minor setbacks, and I’m heading home to DeKalb for the day tomorrow.   If all continues to go well, I may actually be able to go home at the end of August, rather than September 20th (which is the standard 100 days, and conveniently enough – the same day our lease expires on this wonderful apartment).

It’s been a while since I put an update on here, but there’s not much else to report.   I’ve had some visitors, and enjoyed the apartment immensely.   For all those involved in the Netflix gift – thank you!   I’ve upgraded to 3 at a time, which means I’ll always have one here and one in the mail each way (since it’s one day shipping).   One movie a night seems like the perfect amount when you’re essentially on vacation.

I’ve finished an application for visiting student status at NIU for the fall, and should hear back within a week or so about that.   I’m hoping to take two classes, so I’m not overexerting myself and I also have plenty of time to spend with my family (I’m sure Mom wouldn’t mind a break, but Dad and the kids only see me once every week or two).

As I approach my 21st birthday, and tiptoe nearer to the final line that separates me from adulthood, there’s much to think about.   These past 21 years (or what I remember of them) have been all I have to draw on, and I think some reflecting is in order.

Later.

Right now I’d be too distracted by the website.   I’ll finish that first.   Enjoy the fine summer weather, wherever you are!

Older Posts

Recent Comments

JulieB/Julie Spahn on Chapter II: Why Ask Why…
gregbodenlos on Chapter 1
Elaine on Chapter 1
Katie on Chapter 1
Bob on Chapter 1

Pages