Holding the spear

I have never felt more alone than I did when Jane was in a coma. I had the words we had spoken to each other and the love we shared, but it was not enough. I remember saying to myself at one point, “You are all alone out here, on the very tip of the spear, and you have to decide whatever is going to be decided.”

It is what families do.

To this day, I don’t know that I made the right decisions in those last days of Jane’s life. I know I made the best decisions I could based on the information I had at the time. I had friends and doctors and nurses to help me think things through but, in the end, I had to make the final calls.

Alone in the dark

Sunday morning at 5 a.m. I boarded the bus that would take me to the starting line of the Boston Marathon Jimmy Fund Walk. It was 42F and sunrise was not even a glimmer on the horizon. It was the first bus and it got me there in time to eat a banana and down a bottle of water before the official starting time.

I had to make the final calls.

I walked up the hill to the start point, asked a police officer to take my picture, and headed off into the dark. I was wearing shorts, knee braces, and a t-shirt pulled over a sweatshirt. I’d decided to wear gloves against the cold and against the blisters my trekking poles would otherwise induce over the 26.2 miles.

The real Marathon

Most human bodies are not really designed for distances greater than 20 miles a day. When armies literally marched into battle, the wise commander limited his men to 20 miles a day, knowing that going much further than that would leave them too tired to fight at best–and vanished into the night at worst.

I walked up the hill to the start point…

Asking a human being to run a distance greater than 20 miles is even more difficult. As a friend who was preparing for his first marathon-length run reminded me, the first guy who did it died at the end after shouting the single word, VICTORY!”

A test of will

I’ve walked 20 miles many times in the last four years. I’ve walked further than that maybe ten times–four of them on the BAA Boston Marathon course for the Jimmy Fund. Most years, I’ve trained hard for that walk. The only difference that training has made is when and where my body starts to object strenuously to what I am doing to it.

…the first guy who did it died…

Yesterday, that point came about Mile 21. The latest it has arrived for me is Mile 23. But whenever that moment arrives, the Marathon Walk ceases to be about physical conditioning; it becomes, instead, a test of will.

My one talent

People tell me I am a gifted writer, a gifted speaker, a gifted teacher. I am none of those things. I am good at each of them, yes. But the word “gifted” implies some inborn talent and that, I don’t have. My heroes had those talents–and I wanted them. But I did not have them.

I’ve walked 20 miles many times…

I became a good teacher, a good writer, a good speaker because I worked to develop those skills–and was fortunate to have good teachers and good models to help me reach my goals. My single talent, if I have one, is that I am stubborn to the point of foolishness. If I want to learn something, I work at it until I understand it. If I want to do something, nothing gets in my way. Or almost nothing.

The tip of the spear

Five years ago, Jane was dying. Neither of us wanted that–and we fought with every measure of our being to stop it from happening. We failed–and every fiber of my being hurts every second of every day as a result.

…nothing gets in my way.

So when my muscles start to scream near the end of a Marathon distance, they have to compete with an even stronger vision–an even stronger voice: I remember Jane’s pain in the last days of her life; I remember my own pain in those days; and I remember the emotional pain I deal with every day; and I know I don’t want anyone to go through what Jane went through, what I went through, what I continue to go through.

Paying the price

Beside that pain, what my body goes through is nothing. It is a part of the price of finding a cure–and a minuscule part for me compared to losing Jane.

Five years ago, Jane was dying.

So I walked through the dark until the sun came up. I walked until I met up with the part of our team that was starting at 13.1 miles. I walked until my body broke–and then I walked some more. And when I crossed the finish line at last and shouted “victory” again, most of our team and another team of zebras was there to meet me.

Forming the spear point

And this is part of what I said to them: We are not merely an alliance; we are not merely a team; we are family. From this moment, no zebra awakens from surgery alone, no one fights alone, no one dies alone, no one mourns alone, no one stands at the tip of the spear alone.

…and then I walked some more.

“Today, we are the tip of the zebra spear. That spear is aimed at the heart of NET cancer and, together, we will kill it.”

The point of the spear

And to each of you reading this, I say the same thing–and make the same pledge: From this moment, no one fights alone, no one dies alone, no one mourns alone. At one time or another, each of us will stand at the point of that spear, each of us will strive to drive it through the heart of NET cancer–and in the end, we will kill it.

…we are family.

If that means walking, we will walk. If that means being part of a trial or study, we will do it. If it means speaking or acting or simply living, we will do it. It is what families do.