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.


ela said...


bam said...

i cannot even imagine. as soon as i saw that gorgeous face, i started to cry. crying as my heart tried to grasp what it is to birth and love, and struggle, and let go of a magnificent infant turned into a boy turned into a man, who you then had to lose in the flesh. thank God his spirit fills you, fills the space in the world that now must feel so achingly silent. we will be hear to read, and to try to expand the boundaries of our hearts to be with you as you ride these waves. i will become more, get more from my life because of the stories you tell us about ben, and how he lived so large. i wrap you in my words, and in my heart that spills with tears. thank you for the courage to keep on...writing, living, being....

Anonymous said...

Barb, what a lovely little letter to Ben. He gave us a lesson in living life with the same energy and passion as he did, no matter the circumstances. Ann A

Anonymous said...


I have tears for you. He did not leave without inspiring many.


sheila glazov said...

Please, accept my heartfelt condolences. Your tribute to Ben made my heart smile. I have followed your journey with Ben and his accomplishments through your emails and posts. Yes, what an courageous and accomplished young man you brought into this world. I'm sure you will continue to kvell about Ben and his joyful spirit.

Francess Woodworth Howells is one of my favorite poets. I think her words capture what we feel when our hearts are aching.

Life's melody is sadly out of tune,
When memories must live with us too soon.

Please, know that you and your family are in my heart. May your loving memories of Ben offer you comfort, and a new melody that each day will joyfully resonate in your hearts.

Sheila Glazov

Anonymous said...

As I returned to Belgium from a trip to NY/Washington DC & Philadelphia, I found this posting and felt deeply hurt for the lost of another beautiful life. I simply cannot believe this, it seems so unreal... I wish I could have been with you, supporting you, just be near to you because we all share this common grieve, this common question "why" and this common unbelieve. I know Ben was a wonderful and strong man and this not only because of his very strong and wonderful parents. I am with you in thoughts and prayers and hope one day we all can understand the meaning of this.
Caroline & Karen said...

Barbara - and Steven,

I send you my love and my thoughts and whatever else could help in a time of loss and profound change. Though I'm far away in Costa Rica, my heart is there with you. I think of you both often, your family and your wonderful spirit. Love Susan along with Coco and Addison.