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.