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.