The Mask

The Mask
The Mask \| My Story \| Anthrax Girl \| NYC Exposures & Pesticides 2003 \| Resources \| Photos Mask Buddies

More Descriptions

I have trouble remembering to eat and often don't have the strength to get up and fix food when I am hungry. I lie there for hours trying to focus enough to get to the kitchen, then I get overwhelmed when I see more than a couple of items in the fridge, or confused if the pot I was going to use is dirty. I have to go lie back down and figure out what to do for another half hour before I realize...duh, wash it! I imagine in my head what I will need to do and make a chant that I repeat and repeat to get me through. "Pick Up Sponge. Lift Soap Bottle. Squeeze. Pick Up Pot. Turn On Hot Water. Scrub, Round and Round. Rinse." That gets reduced to "Sponge. Bottle. Pot. Water. Scrub... Sponge. Bottle. Pot. Water. Scrub...," something I can manage to hold in my head. Then I realize I have to do another chant first to get my body off the couch, because I've gotten frozen and heavy again, unable to move, temporarily paralyzed. "Wiggle Fingers. Slide Left Arm To Edge. Roll CAREFULLY. Drop Left Leg To Floor. Ease off couch. Crawl slowly--Left Right Left Right." By the time I get back to the kitchen I have forgotten the Washing Chant and have to wait and create a big pull in my mind until it comes back. "What are you doing? [...Blank...]. What are you doing? Eat...no, not yet. What are you doing? Oh yes, Wash! Wash. Wash. You'll need a sponge. Sponge. Sponge. Bottle. Pot Water Scrub." Then I have to coax my muscles and limbs through each step because they don't move the way they are supposed to when I want them to, going back to the blueprint of my chant when I lose my place. Pain, agony, and four hours later after feeling hungry, I finally manage to eat a little something. Often I would fall asleep on the kitchen floor mat by the stove while heating something up, and the food would get burned. Not surprisingly, I lost a lot of weight the first few years.

This is how I have had to handle just about every normal task and daily chore. It goes without saying that I fail at many many ordinary everyday things. Crucial things don't get done, like cooking and eating and drinking and shopping and paying bills and laundry and going to the bank. I get confused and forget my numbers and get lost on the way home, less than three blocks away. I struggle with cleaning up spills and broken dishes and getting mail and putting up groceries. Sometimes I can't do it for two days after getting home, they just sit there while I slept and was in a haze and forgot. I manage to take out trash only about every two weeks, even though the trash only has to go about four feet from my front door. I can't turn off a light or close a curtain or open a window or adjust the heater if it's too hot or cold. I can't figure out how to use email or remember how to get to my files or do any simple computer actions, yet I used to program and build circuits. My printer broke and I couldn't fix it for over a year, then my friend showed up and fixed it in 20 minutes. When my mom came up to give a hand about a year after my injury, knowing something was wrong but not fully understanding the extent, she was greeted by a pile of dirty clothes and mail and papers covering the floor knee-high. Bless her for not turning around and walking away, but bit by bit over the next several months, she came when she could and helped get it under control.

Showering has been a frightening nightmare which I could only manage every three or four weeks. It would take days to do the preliminary work, to lay out my clothes and get my towels ready. I would wait until I was at my strongest because of the danger, and give myself those several days to remember and get clear and focus on the job of getting clean and get the chants in my head. No way I could manage eating afterwards, or too soon before (because the effort of getting food always made me tired). Of course I couldn't stand up to shower because of how shaky I was, so I would sit and lie in the tub. I could hardly lift my arms because of the joint pain and heaviness but I forced myself to wash my hair a stroke or two at a time, then rest. A stroke or two at a time, then rest. The hot moist air was painful and difficult to breathe because of my lung problems, so I would feel progressively more and more dizzy and weak. I had to rest often for long periods of time. If the water got too hot because someone flushed, I couldn't even lift my arm to adjust it. I would go into a daze and probably fell asleep sometimes in water, which always frightened me later on. I would wait there when done with one arm anchored over the edge of the tub to keep me from slipping in, then rest for a half hour gathering the strength to heave my body up and out onto the floor mat. I would pull the towel over me and lie there for 45 minutes until I had strength to slowly dress, using the chants ("Lift Foot, Lift Foot, Slide Leg, Slide Leg, Tug Pants") and eventually crawl out of the bathroom. The whole process took about two hours in the water and two out, followed by a long nap.

When I finally got a health aide and she arrived, that first week when I needed a bath, she stood right outside the door and refused to leave me alone the whole time I was in the water. I was shocked, and for the first time realized how much energy had gone into bathing and trying to be fresh and strong enough to stay alert and safe. I cried with relief, knowing that now someone would get me out if I was having trouble and not let me drown. What a guardian angel she has been to me. Years later, it's still a painful draining task that takes a whole afternoon and that I can only manage once a week if I'm lucky and there's nothing else important that must be done.

back

top