I have a friend coming over for dinner tonight. She's been over before but only a couple of times. She's known me for a few years; in fact she knew me when I was still walking. She is not a "close" friend but we see each other at social engagements on a regular basis.
Having someone over is not such a big deal for me. I have company at least 3 or 4 evenings of the week. I really don't spend all that much time solo. Still, even with the best and closest of those around me, having someone over for dinner requires certain logistics. Those logistics have gotten more challenging over the last year or two.
Take cooking for example. I love to cook dinner. It is one of the great joys still in my life where I feel almost fully enabled. I love chopping the vegetables and onions, slicing the potatoes, preparing the rice, cooking whatever meat is on the menu. I am good at it; people rarely leave my home hungry. Still, there are things in the food preparation process that are more difficult now. For example, if I am slicing up just a couple of things, such as a couple of peppers and an onion for saute, then I put the cutting board on my lap and work there. If I am cutting up a lot of things, such as the ingredients for a Greek Salad, I will often move them all to the table so I can work up close at my height, not counter height. Cooking is still fairly easy with a few simple changes in approach.
Then there is cleaning up. I have trouble with the sink; it's at counter height and set back, a normal sink. In my wheelchair, I can barely reach the taps and I cannot see the bottom of the sink. Loading the dishwasher is a real challenge as I cannot open it full and be in the kitchen at the same time. Given the challenge with cleanup and the ease with cooking, most of my friends and family have learned to let me cook, because I love it, but to do the clean-up, because I have such trouble with that part.
Then there is the whole "after dinner" stuff. Often we watch a hockey game or some TV, perhaps a movie on Netflix. Or we just hang around and talk. They sit on the couch or side chair while I stay in my wheelchair; definite separation. What if I want to sit on the couch? Why not just transfer? Well the transfer from my chair to the couch has gotten increasingly difficult over the last while. The 4" lift from the soft surface of my leather couch to the cushioned surface of my wheelchair is anything but easy.
You might think "you are just doing it once" but then you forget about that most normal of after dinner human functions. Just like the rest of you, after a nice meal I have to go to the bathroom at some point, usually just to go pee. So that means transferring back to my wheelchair, not a simple process. In fact to watch me do that transfer can be scary, and definitely displays my limitations. So if I make the transfer, what do I do when I have to go pee?
There are lot's of other reasons to get up and down from the couch; getting snacks, getting more wine, turning lights on or off, lots of things. If I am on the couch, I am down and settled; those who spend a lot of time with me know this and help out. If I am in my wheelchair, I am definitely separated, but up and mobile; I don't need a lot of help.
My really good friends, those who are around me a lot, know what to do. For the whole "going pee" thing, they leave the room or avert their gaze and let me use my jug. So now to the crux of the issue. I have female company coming tonight. We are likely going to want to sit on the couch and watch a movie. She is not used to my jug. Do I sit on the couch and ask her to look the other way so I can go pee, or do I just stay in my wheelchair so I can go to the bathroom and do other stuff as needed?
You see, nothing is simple, nothing is fast, nothing is easy. That's ALS for you.
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