Saturday, 11 January 2014

Just Listen!

Yesterday I was telling my brother Jim about some the challenges I face with ALS, some of the less than obvious impacts of this illness. In particular I was telling him about PseudoBulbar Affect, or PBA as we say in the biz. This came up because we were talking about something fairly benign having to do with him helping me with renovations and I found myself struggling to hold back the tears.

He looked at me, rather placid, his face almost immobile yet I could tell that inside of him there was turmoil. So I asked him, "What are you thinking?" He said "I don't know what to think or do here. Remember, I am a guy and we like to fix things. There is nothing I can fix here." The problem is, of course, that what I have cannot be fixed.

In response I said to him, "Jim, you are doing the best thing possible. You are listening." That is not all he is doing. Like most men, he wants solve a problem. Action is what we are good at. Jim is taking action. He is giving me large amounts of his time and efforts to renovate my apartment, making it more wheelchair accessible. He is taking time out of his life to give it to me; I cannot think of anything more action oriented. I cannot think of a more giving thing to do.

When it comes to feelings, however, there is very little that anyone can do. When it comes to the emotions, the anger and frustration, the fear and doubt, the sleepless nights and wondering days, there is nothing anyone can do, except to listen. When I need you to hear me, I don't need you to fix anything; I don't need you to tell me the error in my thoughts or how I might look at things differently or why I should change my attitude. When I need you to hear me, the best possible thing to do is simply listen without trying to correct, redirect, caution or fix.

Sometimes I'm not even sure about what I want or need. These verbal expressions, the words that fall out of my mouth, are often unformed in their reality. These expressions of pain, or anger, or anguish, or frustration, or fear, are what lies beneath the surface sea of self. They are the outward expressions of my inner depression and fear, the turmoil needing an outlet, a way to escape before the pressure becomes intolerable. There is nothing you can do. Being there, just being there; that's what counts.

In reality, seeking to respond, either in words or action, is almost the worst thing you can do. When action is needed it will quickly become self-apparent. You will see when I cannot do something. If I cannot reach a cup on the upper shelf, action matters. When I am talking about what I am going through, action not only doesn't help, it may hurt.

When it comes to understanding what I am dealing with, when I talk about my feelings and frustrations, my emotional state, my inner life, action, either in correction or in response, does not imply caring; it's you saying I am unable to fix things; I am deficient. I am not deficient although I often feel that way these days. My body is deficient, not me. I am a whole human being with newly learned limitations, a man who once was capable but is no longer, suddenly and without remittance.

Doing nothing is the hardest thing to do, and often the best thing to do, when I talk about what is happening to me and how I feel about it. Listening is often the most powerful thing anyone can do. Physical help is good; emotional help is essential. Hearing me, affirming me, understanding where I am, this is listening. Listening is good; it doesn't require action.


  1. You say, "My body is deficient, not me. I am a whole human being with newly learned limitations, a man who once was capable but is no longer, suddenly and without remittance."
    I am interested to learn that one of your limitations is that you can no longer listen to the comments, advice, perhaps questions from those around you. You have always surrounded yourself with intelligent, opinionated friends, Richard. Now you are asking us all to do nothing more than listen to you. Some of what you say is beyond the comprehension of many of your friends, but if you want us to truly understand you and your situation, you must expect questions. And because of who we are, you must expect more than just passive listening.
    Credit your friends and family with some ability to perhaps provide some value and support. Consider some of the advice you might be offered. You have the right to ignore it, reject it, or discuss it, and we will understand that. But I do strongly advise you to reconsider your directive: "When I need you to hear me, the best possible thing to do is simply listen without trying to correct, redirect, caution or fix."
    You are not experiencing this terrible disease alone. Friends and family are sharing your pain, albeit in a miniscule way compare to you. For our sake, do not shut us out. For your sake, do not shut us out.

  2. All year Ive been telling people, they cant fix this, they cant fix me. Occasionally we do want feedback from our friends and family, but mostly we want to hear" We hear you, we listen, we care.

  3. Freida (and Richard),
    All the time I hear people say, "I hear you" ... but they are just words. Entering into a dialogue actually shows you that your listener cares, is trying to understand, is seeking clarification. It's called "Active listening" and is generally promoted and accepted as a good communication skill or practice.
    And to be brutally frank, it is because we care that we cannot simply sit, impassively, and listen. For friends and family, it is not ALL about the ALS suferer, it is also about those around you. It's a two- way street. And if you cannot understand, accept, and encourage dialogue, you may find yourself losing friends and completing your journey alone.
    That is how at least one friend of an ALS sufferer feels, anyway.