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Hometown, state: Sudbury, Mass.
Age: 59
Family (spouse/partner; child, grandchildren): My two children, ages 14 and 11.
Hobbies/Interests: Basketball, baseball, football, golf, poker, writing, theatre-going, photography, travel.
Favorite quote: It’s not the years in your life that matter; it’s the life in your years.
Date of ALS diagnosis: September 2001
Tell us about your life before ALS: I've had two professional careers. In 1973, I started a private full-service residential special education school and human services agency for troubled adolescents. After I earned a doctorate in organization development and consulting psychology in 1985, I became a partner in a general management consulting firm. In 1995 I started my own management consulting firm and have built my practice over 20 years. I married relatively later in life, aged 44, and was blessed with two terrific children, Zelda and Teddy. Fatherhood was all I hoped it would be - and more! Finally, as an avid athlete, I also stayed active and kept in shape.
Tell us about your life with ALS: To say it's been a challenge is the “understatement of understatements.” It's been a constant process of learning — learning how to grieve the losses and keep going, learning how to focus on “what is” and not on “what is no longer,” how to conserve energy, and on and on. In effect, I have had to learn how to be present while not being necessarily active. I can no longer speak and walk, but am actively engaged in living a full life as I manage the ALS. I am still consulting part-time through the wonders of technology. I am keeping personal journals and stories as a legacy for my children to have. I am fully active in parenting my children as I divorced in 2004, three years after ALS onset. My children have become front-and-center in my life as never before.
Do you have a “life motto” or profound words to live by? Here is a list of my core beliefs about living life: 1. Life is change and transition…anything else is illusion. Everything is temporary! 2. Hope and optimism always trump pessimism. 3. Do what you love…the money really does follow. 4. Let the “game” come to you...your right dreams will never die. 5. There is no substitute for character, maturity and sacrifice. 6. Life is loss too. We learn more about ourselves through defeat, not victory. 7. Being smart is good, but caring is what matters more. 8. Remember the paradox: our strengths are our weaknesses, too. 9. Go toward conflict and your fears – don’t run and hide. 10. Please, please, please talk about your feelings. 11. Learn to listen…to yourself and others. 12. Work hard with passion. 13. Never, ever, ever, ever give up. 14. And, yes, life really is a mystery -- go where the love is. In the end, it is all about family, friendships, forgiveness and love…I know that now.
Has there been an “aha!” moment or a specific turn of events that has helped you live with ALS? There have been many memorable moments that have helped me live with ALS. Most seem to involve the theme of coping with the losses, learning to surrender to greater powers and to reconcile without giving up hope. I often look in my bathroom mirror, eye-to-eye with myself, and declare with resolve and fight, no matter how garbled and unintelligible, "I am not my body," again and again and again. Or sometimes fiercely shouting, "You (the ALS) will not win."
Tell us how ALS has brought new significance to any aspect of your life — family, attitude, hobbies/passions, career, etc.: I am confident that my children's characters and lives will be enriched, deepened and strengthened by how we are dealing with the realities and challenges of both Daddy's disease and their parents' divorce. ALS has brought me many gifts that I now appreciate in deeper and enduring ways, including being liberated from the tyranny of social norms as I can sit back and observe without the expectation to actively schmooze (I never was much good at small talk anyway), and slowing down from a professional trajectory that, while very meaningful and financially rewarding, was all-consuming in many ways. ALS has challenged me to dig deep and learn more about who I am, as a man and a father. Being a father has been the best achievement of my life.
Is there anything else about you and/or ALS that you want to share with people who read your story? Having ALS sucks, big-time! I struggle with fears — fears of dying, fears of being totally trapped in my body, fears of losing my beloved children, anger at an unjust world, deep sadness at so many losses and unfulfilled potential, and periodic bouts of streaming tears and loud screaming wails as the grieving is endless. All that being said, I still pinch myself when I think or say this, but I understand, more than ever, how Lou Gehrig could consider himself the 'luckiest man on the face of the earth.’ In spite of it all, I have never felt stronger, wiser and more at peace with myself and the world. Go figure.
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