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| Hunter Stars and Pinwheels using HSTs, my latest obsession... And note the coffee theme. My latest addiction.... |
This morning I decided that this is the list I will use. I will print it out and post it and look at it and take great delight in crossing things off of it. Major projects, not just -- brush my teeth (check); wash the dishes (check)....
I would put things on my list such as:
∆ paint the wall in the entryway
∆ clean out the garage
∆ organize the things in the garage
∆ finish the table for the patio
∆ clean up the office and make it less cluttered
Notice the fancy lettering? The symbol/bullet before each entry. Yes, I took great pains to spruce up this To-Do List. I filled a page with major projects I needed to accomplish and some had to do with quilt making and charity quilts and sharing with others.
But the last entry is perhaps the most difficult for me.
∆ give myself permission to have nice things
and to have things the way that pleases me…
And yet we are so fortunate. At least he can still talk, unlike too many of our friends who are dealing with ALS that hit them in the throat and stole their voice, their ability to swallow and their joy of food and eating. We still have food, although choking and dropping food sometimes interferes. And we have a kind of communication that begins with him mumbling something. I respond with a, "I didn't understand a word of that." And him making great effort to enunciate or do hand movements o
r roll his eyes or point until I understand. Every movement, every word is laborous and he quickly becomes short of breath.
He's most comfortable in bed with a ventilator helping him breathe.
Theo, our dear kitten, has adapted well to our strange lifestyle. Better than I have, because I seem to always be on pause. He snuggles and cuddles and keeps his claws tucked away. He seems to enjoy the afghan I knitted almost as much as Derrol... I start a quilt project and wander away from it, feeling like there is something else I SHOULD be doing.
I begin a strenuous project such as painting the floor of the screened porch and see in his eyes the pain and anguish. He was the one who did such things -- before the ALS. He was the power and strength. WE worked together on all things. But now he watches and sees me struggle and do things 'not quite right' and frustration and anger builds. He has no way to escape his demons. No way to make his body do what he wants it to. He's trapped in this flesh and bone overcoat that may as well be cement.
So I tend to make To-Do lists and sneak around to do things that will give him pain and make him feel his disease even more -- not just feel it in the cramping muscles and weakness and choking and inability to breathe -- but in his soul. How can I take pleasure in creating a beautiful quilt, the joy of creating. How can I enjoy the symmetry of a room cheerfully decorated and inviting when I know that he will never see it because his power chair will not fit through the doorway or make the turns from hallway into the room?
So, before I can accomplish the long string of projects on my To Do list, I must first find a way to shake off the lethargie and survivors' guilt and continue living. How does one even consider life when all around me are the signs of dying? How indeed. I need a To-Do list to show me what things I can do, steps I can take to join the living again and stop waiting to die. A How-To List. How indeed....
