I awake. Pitch dark and 6:30 a.m. Because of the catheter, I have been able to sleep eight and a half hours without waking. After a decade of waking every two hours to go to the bathroom, I only have had the catheter two and a half months. I lay there for a few moments. I have to get up and have a bowel movement. I pull off the mask from the BiPAP and maneuver around the bucket by the bed in which the catheter bag spends the night. The ulcer in my mouth—which had gotten better—is now worse and hurts terribly.
In the bathroom, I empty the catheter bag. It has a capacity of 2000 cc’s. I have an over-night capacity of 2200 cc’s. Cleaning myself after a bowel movement with the catheter tubing is difficult but must be done perfectly, otherwise that dread disease—a urinary tract infection. I cannot take antibiotics so if I get an infection, there can be no treatment for it and it may be fatal. I feared I had the beginning of an infection two days ago. Was there itching? Was there burning? Was it my imagination? Whatever it was, it went away.
I weigh myself. I lost half a pound yesterday as I worked to return to the whole-food, plant-based diet. My friend Dick, on the same diet, has lost twenty pounds in less than two months. “My friend Dick,” sigh. My friend Dick has a full-time wife who reads diet books, plans menus, does the shopping and the cooking. If I had a wife to help me, I’d stick to the diet, too.
I go back to the bedroom, turn on the light, plug in the computer, raise the head of the bed, turn the radio on to the classical station, and begin a new day. So what? What’s the point and purpose of this life? To learn to love. Yeah, right. And how was I to do that? Was I to learn from the parents who couldn’t hide the fact that they hated each other? From the men who wanted sex but called it love? No chance of learning anything during all the years that I followed doctors’ orders and took antidepressants. And now? Alone in a HUD-subsidized high-rise apartment building for people who are old and/or sick. Too sick to work outside the home. Limited to traveling by wheelchair. Abandoned by family and church.
Old, sick and unwanted, nevertheless, alive. Why?
Does the body have an indwelling clock and must I wait for mine to run out? Does God have a plan? (I accept God as an absolute.) Somewhere it is written (maybe the Holy Koran) that after our productive years, we are given these years of failing health to get straight with the Lord. I thought I already was, so what’s the point?
Dark night turns to dim daylight. Men start working on the street across from my window. A bad smell wafts up as the rat-a-tat-tat machine starts hammering away at the sidewalk, drowning out the classical music. They have been working on it since the beginning of June; it is now the middle of October. All Central New York work projects have an end-time of November because that’s when the snow starts.
The trees become visible, dark green turning to orange. Street lights blink out. Stink, noise, and a new day dawning: oh, wow. And what will this day bring? I need to go to the dentist to get more ointment for the ulcer. My aide will come to cook between 2:30 p.m. and 4:30 p.m. That is all. Get a Syracuse New Times, check out the Times Table, see if there’s any activity I can participate in this weekend.
Other than that, custom and habit. Brush my hair, tidy up the kitchen, make coffee, read the bible and pray. Tidy up the apartment. Do exercises. Eat breakfast and do paper work. Try not to think about killing myself.
There is no one who loves me and, worse, no one for me to love. There is no family; friends are few and failing in health. It no longer matters that there is no money because there is nothing to spend it on. I have nothing to look forward to except death and that will not come today. What is the point and purpose of living? Why bother? Why go on?
These are the years that are supposed to be spent telling the stories from a long life lived, but to whom am I to tell the stories? Alone in a little two-room apartment, surrounded by others so alone, who am I to tell?
In the summer, Grandpa and Uncle Dick would deposit bushel baskets in the yard under the old maple tree that stood in front of the whitewashed stucco farmhouse. The baskets contained peas or beans or tomatoes or corn—whatever was in harvest at the time—and Grandma, the aunts, the cousins and I would gather to shell or shuck and talk. Grandma and the aunts talked; the cousins listened. It was the time of telling the stories that taught us who we were and what we believed in. It was the time of transmitting manners and morals. It was Grandma’s Time:
“Well, she was a big baby, weighing in at about twelve pounds. Her mother would later say that she didn’t remember any particular pain, but that’s the good work of the Lord. He makes it so we don’t remember the pain and just go on to love our babies. She had not wanted this child. We didn’t know it then but her husband had turned bad. Oh, not bad, really—he worked hard and brought home a good paycheck. He was handy around the house and kept things up, but he wasn’t—he didn’t—.
“She had not married wisely. She wanted to get away from the farm and see the lights of the city, and he showed them to . . .”
Anne, I often avoid reading your posts because I feel inadequate to address what you’ve written yet always feel compelled to respond. You speak the truth that noone really wants to deal with in this life. The truth of what life has become if you are not young, healthy, and oh yea, beautiful. I’m writing to let you know that I’m listening and your words are valued for the truth they convey. I don’t know if you really care about reader responses but my guess is you might based on what you are sharing. All I know is I felt compelled to acknowledge your writing; to acknowledge you and your story.
I care very much about reader comment–I always wanted this to be a dialogue. Thank you for validating my writing.