ALS has meant learning to give up control of my body.  My arms and legs no longer respond smoothly as I attempt to control movement.  My mouth and throat muscles no longer respond to my desires to speak, chew or swallow.  My hands no longer easily complete what used to be simple tasks – tie shoes, button buttons, pull on socks.  All the while my CPU-brain functions almost “normally”, believing itself to be in charge of all around it.

As I react to losing control I experience strong feelings – helplessness, anger, frustration, rage, and sadness.  Adjusting to loss-of-control comes slowly and unevenly, with the gift of acceptance often elusive and short-lived.

Sometimes I channel my frustration with an out-of-control body by trying hard to exert control in other aspects of my life – particularly over people close to me.  “If I can’t control my legs at least I can control XXX.”  Usually XXX is a person – especially a close loved-one.  I have a number of well-practiced routines for accomplishing this, mostly centered on playing the “sick-kid card”.

Not a pretty picture.  People who love and care for me deserve better. And it’s not even necessary or effective.  Because they love me, people close to me will respond to almost any reasonable request I make – often before I can even ask.  I don’t need to be playing control games with them to get the attention or help I think I need.

So I am learning (or relearning perhaps) that love is stronger than control.  Honesty overcomes manipulation. Openness overwhelms hiding.  I am trying to be attentive to the occasions when the urge to be in control of the people around me – whether from fear, frustration or arrogance – comes to the surface. I am trying to stop those inappropriate responses before they overwhelm my better instincts to love and respect.

But it isn’t always easy.


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7 Responses to Control

  1. Karen B. says:

    There are lessons in here for everyone! You are profound! Thank you, Stuart!

  2. Leila Gordon says:

    Honestly, Stu, it’s never easy. For anyone. Always get a lot from your thoughts; thanks for continuing to share them.

  3. Eva keach says:

    Stu, you are a great teacher.It’s indeed a privilege to read your postings.THANK YOU.

  4. Paul Fitzgerald says:

    Stu, so glad to see you yesterday at the memorial for Bruce. You and he have shared & reflected so much wisdom in our Saturday group. And yes, you keep blogging zingers that not only share your deep feelings and reality, but hit me squarely in the heart. They truly have been very helpful to my personal life as your comments invariably set me straight as I get skewed in viewing “stuff” that’s bugging me. Control for all of us is such an illusion. Thanks for being YOU & being so open.
    Cheers, Paul

  5. Tom Murphy says:

    I’m beginning to think that I will never come to terms with losing the use of my shoulders, arms and hands – talk about no control. I sure hope that my feelings of complete and utter frustration don’t eventually lead to the people that love me the most not wanting to be around me any more. I really have to work on this … I’m not used to being the underdog.

  6. Jim Pilgrim says:

    Living the 10th Step can sometimes be a major pain in the ass – at least it has been for me and I’ve been doing it for over two decades. Not surprisingly, the culprit for me is always ego, that persistent and tricky aspect of my life that is both master of disguise and an amazing impersonator of sanity. Thank you Stuart.

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