I’ve been on a massive fitness kick in the last year, going on a healthy diet for the first time in my life and exercising like a madman, and people frequently ask me why. And I don’t always have a good answer; until recently, I didn’t have a good answer even for myself. Part of it was advancing age; nothing quite like trying to do high-intensity activities when you’re 37 and 265 pounds. That’ll force you to face reality in a serious hurry.
Even beginning to realize I was shaving years if not decades off my life didn’t do much to ease my sedentary lifestyle and frankly awful eating habits. Once I get motivated to do something, I’m not prone to half measures – but I spent 20 years not being motivated.
I told people it was a matter of pride, of personal drive, of “someday” finally becoming “now.” And all these explanations make perfect sense and do indeed contribute mightily to my motivations.
But one element looms above the rest. Truth is, I want to be worthy of my son. And I don’t want him to lose his father at a young age.
In May 2009, two weeks after his second birthday, my son was diagnosed with stage-4 neuroblastoma, one of the deadliest childhood cancers. Tumor the size of a cantaloupe, taking up nearly his entire abdominal cavity, single-digit odds of survival. Long story short: 7 rounds of chemo, a stem cell transplant, a dozen operations, and a highly experimental antibody treatment later, he was cancer free by mid-2010 and remains so to this day. Five years old, already having beaten one of the more terrifying means of death nature has ever inflicted on mankind.
But that is not to say it doesn’t remain with him. Chemo stays with you forever, especially on a young growing body, especially when it’s being used at full force and in levels that were considered highly experimental at the time. Chemo is unpredictable, and there is no living person in the world who has had this combination of chemicals in their body for more than five years. He is a living science experiment in real time. Both we and the medical establishment are still figuring it out as we go along. He’s 30 percent deaf and will probably only get worse as he gets older. His attention span is shot to hell, literally fried by chemicals and radiation.
One of the most pernicious long-term effects, however, is significantly weakened body strength, as a result of spending 18 months mostly in a hospital bed. His core strength, legs and especially arms are a couple of years behind where they should be, and he's going through considerable therapy to bring everything up to speed. He was born with a case of clubfoot that was corrected with surgery at age six months, but his feet went right back to their old ways when he spent so much time not walking – therapists worked on that in the hospital, but when a kid is morphined up for weeks at a time there’s only so much they can do.
As a result, the central fact of our lives is rehabilitative therapy – speech, physical, occupational, the works. The long, steady, sometimes terribly slow road to reassembling a body that was ravaged first by disease and then by the cure. At times, the sheer weight of the rebuilding path is almost as heavy a burden as the cancer itself.
He has many experts to help him on this road, and my wife is fantastically dedicated to supplementing it at home. The element I’ve assigned myself is what I like to call the Teddy Roosevelt School of Physical Rehabilitation – much like the future president who overcame a sickly childhood by dedication to vigorous exercise, I spend a great deal of time working on ways to help him get his strength up in the most active ways possible. Lately he’s been less of a student than an equal partner in the matter. His newfound obsession with “Lord of the Rings” has really helped with that, as he’s decided he wants to be as much like Legolas as possible, and understands this involves lots of practice and dedication. He wants to run and jump and shoot arrows and be all sorts of acrobatic, and I for one don’t plan to naysay him.
He started horseback riding at a therapeutic academy in 2010, and after I saw how much it helped him, we set him up with riding lessons from a friend to augment it. The work gives him quite a sense of independence and focus -- he recognizes how dangerous horses can be, and actually takes riding extremely seriously. He takes a TIGHT grip with his legs while riding, much stronger than I would have thought he was capable of, and has held on through some uncanny circumstances, including serious trotting or when the horse was getting ornery.
He nearly fell off once, very early on, when he wasn’t taking the riding seriously. I was right there to spot him, but he learned his lesson quickly. He has treated riding with great respect ever since and hasn’t even come close to falling again. And that got me thinking. When he really wants to, he can focus …
Archery, of course, both increases focus and improves his arm strength, not to mention sharpens fine motor skills that he hasn’t fully developed. I've spent nine months trying to teach him how to do it right, with the help of some excellent local teachers, and in the last month or so he's started actually paying attention to what he’s doing. (Legolas again.) He’s so focused now that he’s actually competitive with himself, and gets very disappointed if he can’t hit the target. More recently we’ve had him shooting a bow from horseback, much to the amazement of his physical therapists. I have to confess a certain glee in showing off these pictures to the medical staff.
Mind you, this has often required a great deal of patience. We will never fully understand the effects of chemo on his brain or the altered way neural pathways form – he grows in a different manner than the rest of us. It took half a year for him to really pay enough attention to nock an arrow on his own. When he’s not interested in a thing, very little can coax him to pay attention. When he’s interested – well, he does nothing in half measures, and he throws himself into it full force.
Sometimes I see my younger self in him.
There's a reason I have all these pictures of him in the midst of whatever physical activity he's up to at the moment, and it's not just proud-papa stuff. (Maybe a little.) It's to reinforce what I'm seeing in my own mind, to remind myself that what he once was -- the hospital-bed-bound child who had to strain every bit of energy to put together a puzzle, a kid so weakened he collapsed while trying to walk from his bedroom to ours the night before all this began, an image that crops up far too frequently in my nightmares -- that child is part of him still but it's not who he IS, and it's not even who he really was THEN, and his true self is every bit as much the young man in 20-degree weather wearing a winter coat and riding helmet and straining his muscles to bend the bow and nail that target one more time. I look at him do this again and again and I look at what I'm seeing in these photographs and I realize: nothing really is impossible for him.
We’re moving into a new realm as of this winter; for the past two years a lot of this activity has consisted of trying to coax my son to pay attention and learn to do things correctly. Now he’s self-motivated. He’s slowly beginning to understand that he’s different – that certain things are harder for him, that he’s not as strong as he should be, that not everyone has to work as hard to make themselves understood, that not everyone wears braces on their legs. He doesn’t like these things but instead of whining about them, he wants to do something about it. (Okay, maybe he whines some too, especially the hearing, but we're working on all that.)
I didn't fully understand the depth of his desire to improve until recently, after photographing him shooting archery from horseback. Removed from the immediacy of the situation, looking at moments frozen in time, I see something different. Something that either hasn't been present or I just haven't been noticing. I see focus and dedication and drive to succeed that was not there before. I see his inherent stubborness being harnessed for good use -- not just to stamp his foot and be obstinate, but to look upon the situation and ACT. Yes, I'm often bribing him with sweet tea or the promise of playing with my iPhone or something, but competitiveness is kicking in. He wants to be better today than he was yesterday. Now that he’s decided on his own that he WANTS to pay attention and do it better – well, who knows what’s to come? He loves roller coasters, he wants to learn parkour, he wants to go rock-wall climbing, he wants to be a freakin’ superhero and has no idea he already IS.
All this stuff ties into why he made it through cancer as well as he did – this kid wants to LIVE, he wants to EXPERIENCE and he will not let anything stand in his way, up to and including one of the scariest things in the world.
And if the child with iron willpower can work so hard to claw himself back from the brink, to put his body back together after hanging at death’s door by his fingernails – well, what excuse do I have for not getting up and doing something? I sit here coaxing him to fire arrow after arrow, make jump after jump, stay on the horse just five more minutes even though he says he’s tired, and what kind of example am I setting? Too many times during this long surreal journey, he’s had to go it alone. Even surrounded by loved ones, sometimes it really was just him and the cancer slugging it out. Too long we were separated on the devil's road. But this part of the path is not just one I should just coach or encourage from the sidelines. In this, we can be side by side, turning ourselves into something new. I am asking my son to work as he's never worked before and I can do no less.
I want him to outlive me, but I’d prefer that I be hale and hearty in my 90s when he buries me, and not lose his father to a heart attack at age 55 because I spent my life on my butt and figured I could eat all the donuts I wanted and my luck would still hold out. I used to think it would be too hard to turn everything around. But it’s not, not for me, not now. Exercise isn’t hard. Dieting isn’t hard. My son has taught me what hard really IS.
My son. Irrepressible, unstoppable. Plenty of guys grow up wanting to be like their dads. I want to be like my son.