Wednesday, July 16, 2008

Josh's Tribute to Ben

Matt, Josh and Ben 1991

Dear Ben,
Today is a very sad day for me, for you are my brother, and now I must learn to live without your wonderful smile. I didn't quite know what to tell your friends and family about you so I decided to write you a letter instead. In your final days, while the spoken word escaped you, you were still writing things down, with your toes and your beautiful eyes, guiding the curser of your life. They tell me you worked until the very end but I will let others tell of your successes and your incredible work ethic, for these are things of less import to me today. You
were such a wonderful brother to me Ben, and truly, you were my best friend in this world you have left me to dwell alone, to navigate without you, my information post, my source of information, my personal news bulletin of my life. You knew me better than anyone. Even when I was screwing up, really screwing up, really bad, you didn't care, and you listened to me, and more important, you always understood how I was feeling. Do you have any idea how I am feeling today? I will tell you. There is an emptiness in my heart that I fear will never be filled, now that you are gone. Can I tell you what a wonderful man you really are? Do you want to know? I know you don't like flattery so I will keep this short, a page or less they told me, but mind you, whatever I have to say, doesn't offer the words you deserve at a time like this. I feel that if I was a runaway train going down the tracks, running wild and free, you were my conductor hitting the breaks, slowing me down, getting a handle on things, and you did, many times, more than you can possibly remember. And if I was a tunnel, empty and hollow, you were my light, filling me with joy and happiness, as my day became complete. I looked to you for so many things in this world, but most of all, I looked to you for answers. You were always smarter than me and you always knew the answers to my questions, before I ever asked them. Answers to the questions I never wanted to ask. Answers to the puzzles of my life when things were going wrong and so in return, I so wanted to help you with your disease, in any way I could, to get over these chains, your body, that eventually got the better of you. I wanted to help you fight it but I didn't know how, and so I suffered with you my friend, every step of the way. The only thing I know is one more instant of your time, out of your busy day, to be with you, and to hold your hand through what must have been a terrible ordeal, is something I will never have. The past few days, I have simply wanted to know how to say goodbye to a man I loved more than anyone I have ever known. Can you tell me that? I don't think so. I don't think anyone can truly say goodbye to someone as beautiful as you, but I try my friend, every day, to say goodbye, but I have failed. I simply cannot say goodbye to someone as kind and incredible as you. And so, instead, from this day to my last, instead of attempting to offer you my condolences for your passing, my respect for your humanity, my humility for your dignity, my suffering for your pain, my friendship for your loneliness, my health for your sickness, and all of my time in this world, however much you would like to have, from this day until my last, I will simply have to live with saying to you, dear Brother, Hello. I will greet you, welcome your smiling face, your wonderful demeanor, your kind words, your watchful eyes, each and every time I watch a little league game in the park, and see a small boy at bat, trying his best to hit the next great homer, or when I see a sailboat passing the tides and the time with a friend, drifting aimlessly on the water, strong as steel in a sea of loneliness, or when I hear a child laugh, and giggle, as I methodically punish the little man, or when I hear a song on the radio, a French tune I know you would love, or when I go for a walk and see people I've never met, happy about something, but nothing in particular, and I think, maybe they knew Ben. I miss you dear brother, now, and forever, and while I know it is my duty to say it, and while I try to muster the word goodbye, it escapes me, and so, until we meet again, I will simply settle for Hello. I love you Brother, as no man has ever loved a brother, now, always, and forever, see you at the ballpark.

Your loving brother,


Saturday, July 12, 2008

Eulogy for Ben

Many of you first met Ben after his illness struck. Some of you knew him before. I had the great pleasure of birthing this magnificent man into the world. And he gave me the rare gift of being able to hold his hand and kiss his cheek as he took his last breath.

From the time Ben was three, we teased that if we took him deep into the forest and cleared his pockets of breadcrumbs and stones, he’d still find his way home. The middle child of five is no easy place to land in a family, but Ben served as our family heart. His feisty spirit challenged each of us and bound us together from the very beginning.

Several months after his diagnosis he said, ‘Mom, I’m going to make a movie about ALS.” Without a clear focus or story line, he began to film and, more importantly, make a life for himself to fill whatever days remained with purpose and love. This past week, we arrived in Cleveland with the great hope of extending Ben’s life in the ways he most wanted to live. He filmed those three final days for posterity. We left Cleveland with Ben at peace, finally.

I miss his humor and wit and grieve for the days we’ll never have. But inside I feel him growing yet again as the ephemeral spirit he was, infusing me with energy and purpose to make my life meaningful. Nothing can ever replace his glow, but in the days ahead, we’ll feel his love as we continue the journey he began, and with his spirit of adventure.

When the film was rejected from Sundance last year, I was devastated and ranted in my usual fashion. Ben said, “Don’t worry. We’ll find our way.” Just as Indestructible found its way into over a dozen film festivals and awards, so Ben has found his way. With his spirit and light to guide us, so shall we all.

Just a few weeks ago, I wrote Ben an email, as I often did when telephone conversations became too difficult. It read. . .

Dear Ben,

In case I haven't said it lately, I'm so proud of you, of all you've achieved, how you maintain focus and use everything you've got to make this world a better place than you found it, in spite of the challenges you face every minute, let alone every day. Sometimes I just sit and bask in the wonder of you.

Love Mom

When the days ahead become difficult, I will remember Ben’s fortitude and strength and relish the gift having known him every day of his brief, relevant life.