Visiting With PALS

I like meeting other PALS, People with ALS. In almost all cases I find them upbeat and positive people, with a strong sense of humour and acceptance of where they are in their life and what is happening to their bodies. We usually compare notes and I learn a lot about ALS and how they are managing, how they are coping with their changes and losses. It helps a lot for me to see what others are going through and how they are responding.

Yesterday I spent the evening with a young woman and her family. She has had ALS for a couple of years, perhaps a bit longer. Her children at just 2 and 4 years old; lively, active and outgoing. It is a household filled with the laughter and excitement of small children. They don't realize what is happening to Mommy. Mommy is just Mommy, and this is how it is. They run to her with treasures, climb up on her lap with tears, play games and tell stories. In other words, life for them is life as it is for all of us.

Her husband is a generous and kind man with a ready smile, dealing with having two small children and a wife, all needing his care and attention. He has an air of calm courage about him; he has a strength that comes from within, a strength that keeps him going. He is quiet with a kind of assurance that says he knows people will listen to him when he decides to say something. When I asked what he really wanted to do, his answer was simple. "I want to make sure my wife and children are okay." That is a good man.

Her family came over for the evening too, her Mom and Dad along with her youngest sister, towing her boyfriend along for the ride. It was an evening filled with stories, laughter, conversation and caring. It was the kind of family scene that I can only wish for, that I would love to have again in my own home; the kind of evening that comes from being surrounded by those you love in a place of safety and protection. The only notable difference was that my friend was in her power wheelchair and I was in my manual wheelchair. It was a normal, regular, family having a terrific evening together.

ALS is an awful disease, if you can even call it a disease. It is an awful illness, where you don't feel ill until the very end and sometimes not even then, where your body dies and your mind lives, where pain comes eventually as a side effect but not as a part of the condition. It is strange to feel so normal, knowing all the while you are dying. Yet if you must die, being surrounded by loving family, happy children and a caring husband seems a good way to do it; living in the moment, loving those around you, laughing and sharing joy, these are the things that count.