Thursday, 24 March 2016

Another ALS Lesson

Many years ago I was told by a counselor that when my then wife talked to me about an issue or a problem, she didn't necessarily want me to jump up and fix it. She just wanted to talk about it. Over the years I have found this to be generally true, except in the cases where my ex-wife was complaining about me. She definitely always wanted me to fix myself in alignment with her expectations. I was such a disappointment to her.

These days, with my blog, I understand more about that feeling, about expressing something without wanting someone to fix it. This blog started out as therapy for me, a way of sharing my feelings and experiences as I moved through the various things which make up the ALS disease process. It was a way of venting, a way of letting go of things. In many cases, not only was I not looking for a solution, I most likely already had one underway.

This morning is a good example. I was going to write about my kitchen being messy. The mess was not the complaint, nor in particular a serious problem. It was the positive residue of a terrific dinner last night where some friends came over and let me cook for them. There are dishes cleaned in the rack, dishes cleaned in the dishwasher, all of which need to be put away. There are counters and the stove top which need to be wiped down. There are odds and ends which need clearing off.

I can do all of this, with the possible exception of emptying out the last of the dishwasher. What I wanted to write about was the fact that these simple tasks, easy enough to do, would take me longer and take more out of me that they would for anyone without ALS. It would, in no way or manner, be a complaint. I am terrified that if I complain, friends will stop coming to see me. I would hate that. Nor would it be a request for help. I have Home Care coming tomorrow; the HCA will empty the dishwasher, and probably just hand wash the few remaining dishes.

This untidy kitchen is not something I am asking for help with, nor solutions for. I have them in hand. My kitchen will be tidy and neat by tomorrow at lunch, either at my hands or with help from Home Care. What I really wanted to do was share the conflict of emotions, the feeling of joy I get from having people over, and the feelings when I realize it takes so much more these days to get things done. It's another reminder of my living motto, "Nothing is easy; nothing is fast."

To my friends, please, I beg of you, keep coming to visit. Let me cook. Help me make wine. Don't worry about the mess. You already do so much cleaning up after meals that there is often nothing left for me to do. I'm definitely not complaining. To people who want to suggest a solution, I have that in hand already. To those who want to know what they can do, you already know. When I need something, I ask for it. That's another lesson I have learned from ALS.


  1. It's great you said something. Because it's so true. The most every day, most common things, people do not see. They're not trying to not see, but they don't see that every little thing that is so easy for them, that is mindless and automatic, is a tremendous decision for somebody who can't do it.

    The decision to clean the counter or put away dishes now or later is major because one task wipes out the morning.

    What's even bigger, though, is how frustrating it is to want something done because it's your preference, because it makes you happy, because it's how you've always lived. Now, you have to compromise and live the way you don't want to, be it a kitchen counter, a vacuumed floor, or going to the store. That's why people immediately either clean up after dinner or do the laundry right when they get home on Friday so they don't have to do it on Sunday night.

    They don't have to sit and wait for the energy or for someone else to make it comfortable. They just do it.

  2. You are amazing my dear in that you manage to do so much despite your condition. I so admire your attitude and ability to get things done. Love you