It's not just me; yesterday's busyness left my brother Jim in a state of pain and stiffness unlike any I have ever seen in him. Oftimes to look at him, you would think him 20 years younger than he really is. On one occasion, some years ago, he was mistaken for Kate's brother, not my brother. He is physically fit, strong and durable. Yet even he gets worn down through the effort of rebuilding my bathroom.
Fortunately my friend Mike is coming over to help Jim today. I dread to think what it might be like if Jim had to work through all his stiffness to accomplish what needs to be done today without someone capable to help him. I am continually grateful to those around me who are helping to make this part of my life as livable as possible. When they talk about prognosis at the ALS clinic, the loss of muscle and limb has almost no effect in terms of quality of life. People adjust to these physical changes. What truly impacts quality of life is the emotional fabric that supports the patient. In my case my brothers, my Mom, my friends and my kids all make up that fabric, something that, on more days than you can imagine, keeps me wanting to live.
Reasons to live are reasons to get up in the morning, reasons to choose life over death. I have reasons to live although in the depths of my depression I would argue otherwise. I have people about me, people who reach out to me daily, sometimes several times in a day, people who care and want to see me live my last months with a sense of dignity and joy. These people, the ones beside me on this journey, are my most powerful reasons to live. There is a reason we use the expression "near and dear"; I have a community close to me and I am a part of it.
Still, I wish I was closer to my children. My two oldest daughters dropped their respective daughters off at my Mom's place yesterday. I would have loved to have been there, to hear the sounds of children laughing, to see them hug each other at the end of their day, to watch them doing something as simple as watching TV. This is the toughest choice I have to make at this time of my life; to leave my incredibly strong support community here in Calgary and attempt to rebuild it in Vancouver so that I can be near my children and grandchildren, or to stay here in Calgary, where I have this strong support network, and miss my children as much as I do.
Life is not easy; sometimes not on the body, sometimes not on the spirit, sometimes not on either. Life constantly presents us with these kinds of choices; to stay with one pain or move on into a different one. Life makes us work to keep it. It's not easy, but it is, at least for me right now, better than the alternative. That's why I don't take the pills; you know the ones I am talking about.
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