Humble in the Face of ALS

by Stuart Rakoff on Wed, 2013-10-02 05:00

Stuart Rakoff

For over 20 years, I have been regularly attending a men’s Al-Anon meeting. What I have learned in that meeting and from my brothers there has been an important part of my ability to deal with my ALS.

Last Saturday, I spoke (using my technology) at the meeting on the subject of humility, and as I prepared I realized how much similarity there was between what I was saying there and what I have been writing on this blog. Here is part of what I said.

Humility does not mean sitting passively in the back row as life passes by. It requires us to engage life with passion and integrity.

Before I understood and embraced humility, I expected the universe to revolve around me. I can remember being caught in a traffic jam, and becoming angry because all the other cars on the road were making things inconvenient for me. I really said to myself, “What are all these drivers doing on the road when I need to go somewhere really important.”

As I gave up the enormous burden of being the world’s master, I was able to be more flexible to accept the real challenges, pressures and stresses of daily life. I now have more patience and understanding with others.

As I became more humble, I began to realize that I was not a god, and things did not have to work the way I want. When I expected things to work out in my favor and they didn’t, it caused a lot of stress.

When I learned to live with humility, I realized that it became much harder to walk around feeling superior and needing to “fix” everyone around me.

When I accepted my humility, I was able to let go of the feelings of shame that had locked me into frustration and unhappiness. As I became vulnerable, I entered a world in which I began to be honest with myself and others about my feelings and thoughts, and began living a more authentic life.

I have learned that achieving humility requires a positive act — a profound leap of faith to acknowledge and accept my humility. As with the second step [of Al-Anon’s 12 Steps], it is not simply surrender. It took a deliberate commitment to a decision and action. But the rewards for this hard work have been life-changing.

I have become humble in the face of my ALS. I have come to understand that acceptance of my journey frees me from the burden of fixing others or myself. I have become grateful that needing to pay careful attention to every move almost forces me to live in the moment, leaving little time for shame, regrets, over-thinking or feelings of superiority.

Accepting the vulnerability that comes with humility, I can be open to the overwhelming expressions of support, and am being nourished by the loving connections to so many family and friends. My earlier embrace of arrogance and hubris did not produce any comparable positive outcomes.

Continuing that theme of humility, it has been one of those bittersweet weeks — there seem to have been a lot of them recently.

I had a birthday — I have entered my 70th year. I am working hard to wrap my head around that. While I did have some feelings of disappointment that I am not where I had hoped to be at this point in my life, I was incredibly buoyed by the number of sincere expressions from friends — one of the positive side effects of Facebook.

I have managed to go almost two weeks now without another fall — paying attention does have its rewards. Even old guys can learn.

I played an active role as part of my Reston Interfaith board chair responsibilities. I used my voice technology to make remarks at a fundraising event and to chair a board meeting. It’s much harder than I had assumed it would be a year ago, but I can still be effective.

I had great visits with old and new friends who seem not too discouraged by my speech weakness.

My feeding tube was replaced by a “button,” which should make my eating life much easier.

Approaching the world and my disease from a perspective of humility enables me to appreciate the opportunities that life is presenting for love, humor and service.

When the roll is called every morning, I am determined to answer “present.”

This blog originally was posted by Stuart Rakoff on July 12, 2013, as Humility.

About the Author

My name is Stuart Rakoff. I am 69 years old and live in Reston, Va. In the summer of 2012, I was diagnosed wtih ALS. There is nothing in my family or health history to explain why I have this disease. I started writing my blog, Drinking Through a Straw — My Journey with ALS, as a way to help me articulate to myself a strategy for coping with my situation. As I shared these brief writings with family and friends, they urged me to share them more widely, so I began publishing them at I hope these writings will stimulate a discussion of the subjects I raise, and I encourage your comments.

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