Addison, Part II

Addison did well for awhile. Around 6 months, actually. After her tumor re-grew so quickly after the initial resection, she received emergency high dose spinal radiation. That halted the tumor's progress in its tracks. Long enough to get in some chemo.

Addison then received approximately six months of very high dose chemotherapy. She was frequently inpatient in the hospital, receiving some of our most intensive IV therapy. This was a very trying time for Addison's mother; since her daughter's diagnosis and for weeks before, Addison had experienced non-stop, intense nerve pain.

Nerve pain is unlike other kinds of pain in that it is usually sharp, shooting, and often sudden. Not the kind of pain you  would want to have to manage in a three year old.

However, sometime in January (about four months after radiation) Addison's pain had resided, and her neurologic function had improved enough that with aggressive physical therapy and a walker, she was actually able to walk on her own again. Which again was a relief for her mother, who had frequently been carrying around a large three year old.

Amazing, what a kid's spinal cord can do. Seems like adults lose function and never can regain it. (This, in my opinion, is only one of the many things that make children more like amphibians than people.) Really pretty astounding.

Addison then enjoyed a few months of improved function, bowel and urinary continence, and a relatively normal life. She even smiled and talked with me during one of her admissions- the first time that had happened since I'd met her.

In that respect, Addison was fairly normal. Some toddler and preschool aged children do continue to interact normally after a diagnosis of cancer; however, there are definitely an equal or higher number of children that regress. Whether from fear, anger, grief, or an inability to understand and cope with their diagnoses, many children in this age group simply stop talking to anyone other than their families. A few stop talking at all.

Addison had been in the former group; until her condition improved, and she emerged from her shell. It was then I saw the Addison none of us had ever known.

After all, living a pain-free, relatively normal life had been out of her reach for over 4 months. It was a glimmer of hope in a a desert for a devastated family.

A glimmer that vanished just eight weeks later.

Addison, Part I

The first time I met Addison, I have to admit, she freaked me out a little.

And I'm going to be honest with you: if you're looking for something cheery... this is a long story, that doesn't end well. Look elsewhere now for a good old fashioned American ending, because this story is sad. And real, honest-to-goodness non-fiction.

Addison was almost three years old when she was diagnosed with the rarest of the rare- a very rare childhood brain tumor, that- unusually- was growing at the bottom of Addison's spine, instead of in her brain.

The unusual thing about ATRT (atypical teratoid rhaboid tumor), is how aggressive it can be. Addison lost the feeling in her legs first, then her ability to walk within days of diagnosis; one week after her tumor had been completely surgically resected, it had regrown completely, back to its original size.

The other thing about spinal cord tumors, is their destructiveness to a person's functionality. Imagine how many functions depend on the nerves going down and out the bottom of your spinal cord. Leg muscles, sensation, reproductive functionality, bowel and urinary continence. Everything below the waist, really.

And when I saw her for the first time, she was the first toddler I'd ever seen in a wheelchair, paralyzed by her cancer. 

Cancer can be such a bastard.

Our Culture's Unwitting Acceptance of Machine-Controlled Lives

I may be getting a little paranoid lately... but tell me if you think this is true. In our world today, almost everything is controlled by machines. And these machines are feeding us ridiculously large amounts of information daily that influence our thinking, morals, beliefs, and, in some cases, are isolating us from the most important things in life.

In other words, mind-influencing; if you are aware of the messages these machines are feeding you. If you aren't, it might just be mind control.

Thinking I might have gone a little wacko while taking a rather long break from my blog? Well, you'd be wrong. I've been thinking deeply on this subject for all of seventeen minutes this evening, and have come to the following realizations:

People are obsessed with machines in our culture. Absolutely obsessed. Cars, phones, computers, televisions, iPads- you name it, people will do anything to get their hands on it. Machines.

For starters.. what kind of car you drive, our culture says, tells something about the person. Thus the machine you drive has some control over your social status.

And with commutes getting longer and longer as people have to move farther and farther away from the city (to cram their McMansion into some treeless suburb that is a safe distance from the inner city but close to a nice mall), people spend more and more time (alone) inside of their driving machines.

And what do they listen to in these driving machines? Music playing machines or broadcasting machines. Machines broadcasting lyrics and information into our heads.

I have spent a lot of time in airports and on airplanes in my life. And I can tell you that you used to see people talking to each other in airports- finding out where the person in the seat next to you was from and where they were going. The last time I was in an airport (this last May) I had never seen so little social interaction between strangers. Most people are staring into their machines- iPads, iPhones, laptops. Keeping them from having to even make eye contact with a person; omitting even the chance for a friendly smile, much less a conversation.

And what are these machines "telling" the person? Well, if you are on facebook, your machine might be telling you what everyone else in your culture is doing. And therefore leading you toward certain thought lines about what you need to do to fit into your culture.


"Skydiving!"


"Our accomodations for the night {insert picture of Scottish castle}"

The interesting thing is that you have no actual interaction with a person, although you are using a machine to ascertain what people are doing.

Going on... I will skip the 8 hour day staring at machines that most of us have. Because most of the staring into machines at work we do is inputing information, and not necessarily being influenced by it. And a given work day may include a lot of social interaction.

However, when the average person comes home from work, what do they do?

Turn on their staring machine. The big machine on the wall they stare at and soak up advertisements and cultural messages in the form of reality TV shows or sitcoms showing what "everyone" in the culture is doing. These TV people are flawless and have perfect houses... hard to live up to in real life. And these are machine people; they are not real, they don't exist. And they are not interacting with you.

That's the sad part about machines; they can be so isolating. Most people commute in their car alone. You can't find out someone's hopes and dreams by watching TV with them. You can't meet friends from other countries in an airport by playing Angry Birds for an hour.

So, after most of us are done being influenced by our brainless home machines for an hour or three after work, what do we do then?

Get on our small handheld or desktop machine again to check our electronic machine mail or facebook again to see if anyone sent us a message with absolutely no human element of interaction. Because only our grandparents handwrite letters anymore.

The real kicker for me tonight was when I was watching my house's machine on the wall and saw an iPhone commercial. Some actor whose name I can't remember but whose face I recognized was sitting in a beautiful apartment, dressed in an expensive suit, utterly alone. And this man was having a conversation and entertaining himself solely with Siri, the robot on his iPhone machine. She tells him a joke and the commercial ends with him chuckling as if he is interacting in some normal, human way.

And it just hit me... what an empty, horrible life. To have everything you need materially and to have access to all this "information" but to have such a poverty of real humanity. Like handing your wife a hand picked wildflower on the side of a lake with the wind on your face as you watch the smile in her eyes when she smells it.

Now don't get me wrong... most people's experience with Siri more likely includes "Sorry, I don't understand" in that robotic voice. But the way I interpreted that commercial's message was: Information-feeding machines can provide everything you need.

Sure... maybe the machine can give me directions to the lake to an enable an experience I might otherwise not have had. In those cases they are useful; when you control them.

But when the majority of "information" these machines are feeding me is so unrealistic (i.e., perfect houses, perfect bodies, flawless faces, exciting adventures, fantastic vacations) how else can I interpret it but that these machines are evil and give people unrealistic expectations of themselves and their culture?

FURTHER, (sorry getting on some kind of tangent now), machines may be productive (work, email, etc) but.... really. Farmville? Facebook? Desperate Housewives? These machines are sucking away hours of our time with no results, nothing done. AHHHH! Its so evil!

Having started a garden this year, I have a very small concept of the kind of hard work people used to do (and in some parts of the world, still do) to survive. It was not only outside in the sunshine- in nature; it was often collective, and most importantly it was productive. How awesome, to see that the tiny seeds you planted months ago have now yielded a tangible harvest that engages your senses- smells good, tastes good! One that you can enjoy with your family, that you can feast on together to fill one of your most basic needs. But our culture has lost a lot of that now.

Count me out. I hope to never own an iPhone or be addicted to the machine on my wall or in my hand.

The real question is, are you controlling yourself and your own mind? Or are machines controlling you?