Sunday, 1 June 2014

Leg Weights

Last night I had a party, a bunch of people over to help me bottle wine. We ate, we drank, we visited and laughed. It was a wonderful evening. For dinner I made a Risotto Saffrona with Seafood and a Caprese Salad with Hot Capicollo slices. Others brought wonderful salads, rice pilaf, garlic bread and even appetizer snacks. Several bottles of wine emerged from various bags, and I made Chocolate Martinis for those who asked.

These kinds are parties are great fun for me, with one notable exception. Almost invariably, by the time I finish cooking and preparing and welcoming and mixing, I am no longer hungry. Last night was much same as other nights like this. Dinner was served and all I could manage was a bit of garlic bread and a tomato slice. The Risotto disappeared as if vacuumed from the plate; I didn't even have leftovers when I finally got hungry this morning. Still, I cannot complain. I am eating Rice Pilaf as I write this blog, and it is good. Plus, I have nearly 60 bottles of wine in the cupboard. I can hardly complain about that.

Most of the evening was spent simply being alive; ALS didn't come up at all. We, as a group, just go on living as if nothing was different, except that I am in a wheelchair. It's no big deal in our lives as a group, we get on, we have fun, we laugh, we spend time together. The elephant is clearly in the living room; we are just so used to seeing it that as a group we really don't talk about it all that much anymore. After all, what's left to say?

Still, it comes up, as it did last night towards the end of the evening. Questions were asked, examples were given, explanations came out. One of the challenges was explaining what it is like to live with dead legs while sitting in a wheelchair. I demonstrated how I lift myself with my arms, even though my legs hang there. My friend Dan tried it; I pointed out to him that he was using his legs, although involuntarily. So he lifted them in the air and did an arm lift in the Phoang chair. I thought, yeah, kind of, except he did it once and I do it 80 times a day.

Then, this morning, I thought about something Mike had said a few weeks back. He suggested that if you really want to demonstrate what it is like to have these dead legs, people should strap about 25 pounds of weight to each leg, then put on a pair of rollerskates. Thus encumbered, at that point they should try a lift, a transfer. With that weight and those rollerskates, they should try to force themselves vertical using a counter or dresser as their lifting surface.

Mike is right. It's a lot more complicated, and difficult, than simply not using your legs. These dead legs are more than just hanging there. Trying to use them when they just get in the way makes them an impediment, not just a weight. I wish I had the tools to show this to people; it would make my frustration easier for them to understand. It's a great model of what ALS has done to me.

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