Friday, December 19, 2008

An assignment of sorts

Inspired by fellow epithelioid sarcoma survivor and all-around interesting guy Josh, I spent a few hours the other day drafting an "ethical will" for B. and T. The idea is to write a document that serves as a kind of inheritance for your loved ones -- but an inheritance of ideas and values rather than material possessions. describes them as a sort of love letter to your family; a way "to share your values, blessings, life's lessons, hopes and dreams for the future, love, and forgiveness with your family, friends, and community." There's no set format, and the examples on the site are all over the map, so I spent some time sharing with T. and B. some of my thoughts and observations about life. 

I thought it might be weird, but it wasn't. Although I produced an initial flurry of letters and thoughts for L. and the kids immediately after I got sick, I have been far more reticent lately. As I got sicker and more worn down from treatments, I became less willing to voluntarily grapple with my death in that way. Silly, I know; but it's how I have felt. Drafting the will turned out to be fun and intensely meaningful, however. It didn't feel morbid, perhaps because I have a promising treatment ahead and am feeling OK-ish physically.

So here's my suggested assignment to you, my readers, both the sick and the well: Sometime before the end of the year, write a letter to someone you love sharing things you wish to share with them. (L. used to write an annual Christmas letter to B., which was a wonderful idea.) Hopefully and probably no one will read it for decades -- though I don't see any reason why you couldn't share it at the right time while everyone is still around. Don't get all Flaubert about it. Commit to sitting in front of the computer for 15 minutes. Sit there and write the first sentence. Then write the second and the third. It doesn't have to be perfect. You can say anything. You can write another letter to amplify the first, so don't think you have to get it all down perfectly in the first shot. Just write something. It matters. 

I'm actually a little worried that my document reads like a unfortunate cross between All I Really Need to Know I Learned in Kindergarten and Life's Little Instruction Manual, but approaching the writing in a somewhat light way was the trick I needed to help me say some of the heavy things that I wanted to say. Anyway, here's a little snippet of what I came up with. Maybe it will trigger something in you:


I like to think of myself as a pretty good person, reasonably well-adapted and happy, but you’ll have to trust me that much of my early life was a train wreck.


I myself acted out horribly in school for years, causing many unnecessary problems for myself and others.

I was a terrible nerd. Fat, carbuncular, possessed of awkward clothing and demeanor, consumed at times by despair and solipsism.

But I grew out of it, you know. And even at my unhappiest and least attractive, I was reading, thinking and engaging with my (very few, but high quality) friends.

Change can happen so suddenly. I started ninth grade, and everything was different. Over the course of less than a year, I shot up about a foot, going from pudgy to slender, bought new clothes and adopted a new hair style, traded my glasses for contact lenses, got my braces taken off, etc. These external issues didn’t fix my problems, but they did relieve them. Skateboarding helped, too. Remember that the eccentricities and interests that make you geeky in school, especially junior high school, often prove to be highly adaptive in adult life.

Yes, transience. Even now when I am facing the terrible prospect of losing my beloved wife and two beautiful children to a horrible, painful, humiliating, creeping disease, I still find that the most visceral despair I have ever felt I felt in my adolescence and teenage years. Seriously. Heed that for a second: I am honestly telling you that growing up is harder than having cancer. Heed this as well, it’s even more important: Many of the problems I suffered the most over simply did not matter. I don’t even remember what they are now. Repeat to yourself over and over that this too shall pass. I hope that I am not making light of how difficult this time of life is – remember, my guts shrink even now thinking of the many and varied agonies of junior high and after – but time and perspective are crucial friends.

Your mom knows more than you think. But she makes mistakes, also. Forgive her and love her. Fate cheated you out of your dad; don’t cheat yourself out of your mom.

Value family. It has sustained me my entire life; first my parents, then your mother and you two.

I am so sorry I have to leave the two of you. I love you so much; I fight and fight and fight to live to be with our family.

You are eventually going to be fine, I swear it. I know you both, my little darlings.