I woke up. Not a problem. A good beginning.
Around 6:00 a.m. I got up, cleaned up, made my tea and turned on the lightbox. I have seasonal affective disorder, a problem common to Central New Yorkers, and it is treated by sitting within fourteen inches of a full-spectrum lightbox for an hour. I accomplish this by setting it up next to my computer and working on my blog while I catch some rays.
Okay, good thing. Going well. Then I tune in some John Philip Sousa marches, clean up the kitchen, make coffee—I have a rare kidney disease and have to drink constantly—and do my little exercises for right arm muscle contusion. An HSBC bank door slammed shut on me while I was trying to get through it in my wheelchair.
Then I settle down for my daily reading of the Holy Koran, and prayer. All sacred texts are pretty much the same and reading one enlightens another. For example, the Holy Bible makes it clear that sooner or later we will be judged! Well, okay, but the Holy Koran says the Lord not only will judge us, but also will judge between us! Totally cool. Comes Judgment Day, the Lord’s going to settle this thing between me and my sisters.
Then I tune in Alan Jackson singing “How Great Thou Art,” and get dressed, tending to topple over when I put on my pants because my balance is deteriorating. According to my friendly local physical therapy professor, loss of balance is the main reason people end up in nursing homes. There’s a simple exercise you can do for it, but I’m beyond that now.
Then I make a nice breakfast sandwich—sausage and apple butter on toast, more coffee—and settle down with my appointment book, legal pad and telephone. I have executive dysfunction learning disability, which impedes my ability to sort and organize. I have to work with lists for years before a routine becomes fully internalized. My main routine is to make lists, then phone calls: to Sharyn to decline her Thanksgiving invitation on the grounds that it would be too stressful; to Call-a-Bus to set up transportation to the grocery store tomorrow; to the music center to see if the women’s drumming class is wheelchair accessible.
Now I am tired–I have chronic fatigue syndrome– and need to take my first nap of the day. I put myself to bed—feeling virtuous—and the phone rings. It is one of my aides. She wants to change her schedule again. That’s the third time this week. I have to put a stop to this—maybe. When you are wholly dependent on aide services for showers, clean dishes, and cooked food, you have to take what you can get and what you can get is usually pretty bad. You learn to put up with a lot of things you don’t really want to.
I put on the auto BiPAP mask used to treat sleep apnea and snuggle down for a nap, but I don’t sleep. Behind my closed eyelids there are images of . . . well, okay, none of your business, except to say that I am, in all the important ways, a fully functioning female. After an hour I get up, grinning from ear to ear, and get dressed for a job interview. I am interviewing two more women for the aide position left open by the woman who quit on Saturday, telling me that I am “a lonely, racist bitch.” Yeah, and she doesn’t worship God and does use a baseball bat on people who “disrespect” her. I’m willing to make a bet on what God’s judgment call will be on that.
The woman scheduled for the 10:30 appointment doesn’t show up. This happens fairly frequently. They make an appointment and then blow it off without notice. The 11:30 appointment does show up. It has been my experience over these last ten years that the aides with whom I work the best are (a) in their thirties, (b) have one or two children, (c) are white, (d) grew up outside the city, (e) got started in the aide business by taking care of a family member, and (f) are working toward a degree in nursing. This woman qualifies on three points, and might work out.
Then I call the agency and recommend that they remove the no-show’s name from the availability list so nobody else will waste their time on her. Then I call the no-show and leave a message that her failure either to appear or to call and cancel got her de-listed. You fight back or die. If you let them walk all over you and treat you with disrespect then you will hate yourself. Just don’t use a baseball bat.
Then I eat lunch—egg and olive on toast, Harvey House cole slaw, and half a cup of Cherry Garcia ice cream—and yes, dear friends, you can stop after half a cup. It takes discipline, motivation and practice, but if you are in a wheelchair then you are sedentary and aren’t burning calories. Getting fat is a side effect of being in a wheelchair.
Then I start to get ready to go out, and that’s when things begin to unravel. I can’t get my sneakers on. I no longer can tie my shoes so I usually wear step-ins, but my aide and I have left my sneakers loosely tied so I can (sort of) step in. What is life without sneakers? The guy from the bus company calls. I filed a complaint, he asks if I’m calling him a liar, I say I just want to hear the tape recording for myself—there’s a knock on the door. I yell, “Come in!” and keep talking to the bus man. The knock sounds again. I yell “Come in!” again, walk to the door still talking on the phone, and find the UPS man. He’s deaf. Oh, crap. I snap at the bus man that I’ll have to call him back, hand up and deal with the UPS man. (To be continued)