Chapter 2: October 1987. Part i.


At the Syracuse airport, Hettie and I missed our kiss.
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I'd fantasized Jane with me many nights this summer, especially since mid-September when we'd agreed to be with each other my first night back in Tucson. Now, flying west, I wondered whether tonight I might speak, be heard, and see my fantasy transmuted into flesh. I sensed not. Owl had been nine yesterday and Jane had seen him, but by the time I'd talked to her last night he'd already left to rejoin Story and she was crying. She might want me to hold her, might even want to make love, though if we were doing coke probably not; she would not, even as foreplay, want to watch me touch myself as she encouraged me to feel.
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At 2 A.M., five hours after my plane landed in Tucson, Jane had just put me to bed; we'd been doing lines and drinking beer since getting to my house.

"I don't feel sexy when I do it," she said.

"Maybe some night I'll use coke and you can do your drug of choice," I said. I knew she'd want to use something if I were doing coke.

"I'd like that," she said.

We had talked, as I had been sure we would, about Owl and Story. I'd also tried to tell her about what I'd felt both this summer and in the years with Marjorie, but what she'd heard was not what I had hoped to say.

"With you and Lee I was in love, and my lack of feeling was something we joked about. It was never a serious problem because we were in love and I literally felt the love--really felt it, you know, physically. Even with women I was with just once or twice, I was always pretty terrifically excited. With Marjorie, even in the beginning, there was a perplexing lack, and in that first time when she and I were with each other a lot, when you were first living here with Seth, my sexual response was weirdly muted. Then one night we talked and after that, using coke, I felt things I never had--and this summer I felt still more."

"You didn't feel when we made love?"

"Yes, I did; I definitely did. But. . .--"

I was inarticulate and she was spooked by whatever it was that she thought that I was saying. Our night reminded me of bad nights with Marjorie, full of cocaine-exacerbated misunderstanding and repetition. I shouldn't do sgurd with Jane again, I thought, and would seek to avoid doing so.

Three nights later, October 6, again sgurding, Jane and I made love after I'd twice more failed to describe my summer feeling. I couldn't find words with which to say what I wished and, over the next nine months, would find I couldn't find words with which to write it, either.
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The day after I returned to Tucson Faith rang my doorbell. Except for six months in 1984 when I had lived in Santa Cruz, Faith's mother Dorothea had taken care of me steadily from late 1983 until I flew to Jamesville in June 1987. When Dorothea had told me in April 1987 that she couldn't go to New York with me (she also would tell me, shortly before I left, that she wouldn't be able to resume her job in the fall), I'd immediately spread the word that I needed someone.

The someone had proven to be Colleen. She and I hadn't known each other well when she asked about and took the job, but we'd been acquainted since meeting at Wurts Farm in 1979. In 1979 she was fifteen, a tall heart-breakingly pretty red-head and tough as hell, which was fortunate because she and my friend Bert were soon in love. By 1987, when she, I, and their two sons left for Jamesville, she and Bert were more or less separated. She was still red-headed and beautiful, and I wondered whether I would fall in love with her, imagined (typically) that I could be loyal to Bert and be her lover too. After our first four days in Jamesville I'd known we'd not be lovers. She wasn't interested, and I'd given no overt indication I was. I was relieved, not without regrets, and impressed at the subtlety and efficiency of her negative signaling. It would have been a mistake, no doubt, but it took me a week to stop spontaneously whistling the Beatles song which begins "Something in the way she moves, Attracts me like no other lover" whenever she was nearby. She never did coke with me or the others and would not be one of my summer fantasy lovers.

Faith, who was now seventeen, wanted to know if she and her boyfriend Throck could move into the unused garden house that was attached to and barely bigger than my 1-car garage. She also wanted me to know she'd like to do what her Mom had done and take care of me.

"I think I understand it pretty good," she said.

"I don't think there's work, but there might be," I told her. "For now Lee and Nadine are going to do it, and Colleen wants to keep working when she gets back, too."

"If we live out back, we stay up real late--if you ever need anyone late."

"I might at that."

"I give great back rubs too. My Mom taught me."

I valued my seclusion and wanted no one in the back house, but Faith and Throck were poor and needed a place to live, and she would, as she said, be helpful if I needed someone at odd hours. I'd met her three years ago in Santa Cruz when her mother had visited me there, and had even kissed her once. Dorothea had kissed me as they were leaving the house one day and I had said to Faith, "What about you?" She'd kissed me on the lips, as I'd wished her to, but her lips had been tight, as though she were afraid, and I'd wished I hadn't asked.

I'd never met Throck, a striking young man with full lips, green eyes, and long almost black hair; he was six feet tall, thin, and walked with a slight outward kick of his right leg caused by a childhood accident. As a boy, pampered and neglected, he had discovered people shallow, hypocritical, and slow; now 19, he thought this childish view over-generous. He played bass in a popular and well-regarded local rock-and-roll band and hoped to go to Julliard, was a computer whiz, and had no illusions about how smart he was. "Why write after Joyce?" he said to me one day soon after we met. "He killed it. I haven't written since I was twelve."

He had suffered frequent beatings from classmates in junior high and high school that he attributed to resentment of his high I.Q., and in his early teens had survived addiction to heroin (his connection for a time was Dorothea's sometime lover Jock), from which Faith had weaned him when, fourteen and fifteen, they had begun living together. They'd lived with each other since, and I soon decided they could move into my unused space.

"I'll get whatever you need, make sure everything works," I said. "Just tell me."

"And if you need anything," Faith said, "I'll be right there. We don't go out much."
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I'd heard of Faith since she was a child. Lee, Nadine, Estelle (who had preceded Dorothea as my caretaker), and other friends of mine had known her since she was six, in 1977, when they'd worked with Dorothea and Faith's stepfather Allan picking fruit. Dorothea and Allan had a daughter three years younger than Faith and two younger sons, to all three of whom Faith at seven had been a little mother. After leaving the fruit trail, the family had moved to Patagonia, an Arizona border town, and opened a co-op in which Dorothea and Faith had done more than their share of the work. Allan and Dorothea had married on the eleventh anniversary of their meeting and separated for good and for better and for worse six weeks later. Faith felt bad for her mom when the split occurred but was glad to get away from Allan. Allan's neglect of her had been benign compared to how Jock's caring would be, but Jock had not yet come on the scene. Faith still, in October 1987, hadn't told Dorothea all the things Jock had done and had her do. She'd tried to, told her mother something had happened, but she'd never been explicit about Jock's fingers or the rest.

Dorothea had met me the fall of the first year she'd picked fruit with my friends, and both the mother and the nurse in her had been attracted. On the job, she talked to me about Jock, whom she'd left shortly before coming to work for me; about her daughter Faith, who was living with a boy named Throck; about Faith's classmate, friend, and rival Raythen (with whom I would fall in love in 1989—Raythen Book 3 of Love Notes, the never-to-be-written series of which this is Book 1), who was fifteen and pregnant and living at Dorothea's; about anything she wanted to talk about. I was a good listener. No one but my mother--who did it for six years (1964-1970)--had taken care of me as long as Dorothea had by May 1987.

I was incontinent, needed help with personal hygiene and getting in and out of bed, and required other care, and I had no experience as a housekeeper, cook, or shopper.

My bladder incontinence was dealt with by an in-dwelling catheter, a tube inserted through my penis into my bladder. An effort had been made two years after I was hurt to teach me to fill and empty my bladder on a schedule, but my left reflux valve (we have reflux valves which prevent backflow from bladder to kidney) proved to be damaged and, though an in-dwelling catheter is a constant source of infection, permanent catheterization was deemed my best option. (It was also, it later occurred to me, excellent birth control.)

Bowel-incontinent too, I had experimented with various bowel regimes, but by 1983 when Dorothea joined me I'd given up on all but the one I still used. I had alternating morning routines. The night before what had come to be called shit-chores, chores for short, I took four pills of a senna extract as a laxative. When I'd started the senna I'd taken only one, but over the years two, then three, and now four had become necessary. On chores days, Dorothea would press a bisacodyl suppository as high in my rectum as she could. As it dissolved, it caused my bowel muscles to contract (peristalsis), and if the bisacodyl-induced contractions didn't expel the stool they sooner or later, and in combination with more or less digital stimulation, brought it into the rectal vault, into which she could reach with two or more gloved fingers and scoop it out. During chores I lay on my right side with layers of newspaper under my butt, and after each digital check the top layer of paper was wrapped around whatever faeces had been extracted and dumped in a paper bag. At the end of chores, when my anal sphincter had tightened, the rectal cavity had contracted, and I had, usually, expelled a last bit of nearly clear water, the chores bag was put in the trash or, at the farm, burned. The entire process very rarely took less than an hour and a half and often stretched to three hours. Sometimes it took longer, and sometimes I got up unsure I was done, hoping I wouldn't shit in my chair. I rarely did, which is to say, rarely, I did.

Immediately on non-chores days, after the suppository was used on chores days, I was washed in bed with special care given to my crotch, which was susceptible to yeast. It was important that whoever washed me notice any red marks on my skin because, since I lacked sensation, red marks were (almost) the only warning that a pressure sore might be developing below my sensation line, and pressure sores, once established, are sites of infection and often very difficult to heal. Range-of-motion exercises were done on my legs after the wash. Before I ate on non-chores days, or after chores, Dorothea would unplug my chair from the charger--its two deep-cell batteries were charged nightly--and wheel it to the left side of my bed.

Two trapezes--triangles--were attached to chains suspended from eye-hooks in the bedroom ceiling. One chain was over me as I lay in bed and I used it both to transfer from chair to bed and to shift my position in bed. I always used my left arm for lifting, not gripping the horizontal bar with my fingers but putting my palm and the heel of my hand over it. I could lift my back off the bed using my fingers but avoided doing so because, when I did, I seemed to hear rather than feel what I guessed was a tendon slip from one side of my knobby ulnar bone to the other. The second trapeze was hung about six inches outside the bed, and I used it getting up.

Going to bed, my helper would remove the chair's right armrest and lift my legs into bed, I'd grip the in-bed trapeze, and, when I tried to lift, did lift, my helper, standing next to my chair, hands under my butt, would push. Getting up, I was pulled to the edge of my bed and my feet were put over its side into a home-made topless box that was permanently attached to and rested on the extended leg rests of my chair. I would then grip the trapeze bar attached to the out-of-bed chain with the fingers of my left hand, steady myself by gripping the bar with my right hand's fingers, then move my left hand so that, again, my palm and the heel of my hand were balanced over the bar. My helper would stand on the far (left) side of the chair with arms around my waist and, when I lifted, almost entirely with my left arm, pull. Done properly, this maneuver was safe and easy, but it was hard for helpers to learn not to try to do too much and some had been hurt. (Others were hurt by all the repetitive bending over required for chores and the wash.) Once I was in my chair, Dorothea, having first put the armrest in place, would slide her hands under my butt and pull me back, then prop me with whatever pillows I was using that year and, last, free my balls from under me and cup my scrotum in a wash cloth or bandanna so that skin didn't touch skin. This last maneuver was essential; skipping it usually led within a day or two to a nasty yeast rash.

My clothing was minimal. From the early 1970s (when I stopped wearing pants, which were a nuisance to put on and sometimes pinched the catheter, and shoes, which I should have kept wearing because they reduced foot drop) into the 1980s I wore only socks, one or another small kitchen apron, and one or more shirts, depending on the temperature. It was while Dorothea was working for me that, for reasons I do not recall, I abandoned the aprons, which had a tendency to work their way around my back. (When they did, because I was always sitting and almost always had a towel in my lap, my frontal nudity went mostly unnoticed, perhaps partly because the sight of my extraordinarily long thin naked legs had already overwhelmed the casual observer.) In the new system, still the one in use, Dorothea centered a fully opened bed sheet on my chair so that its sides were draped over each armrest and its upper edge reached to the top of my chair's backrest. This made it so that after I was transferred into my chair I was sitting on the sheet, its top edge at my shoulder blades. The right side of the sheet was then wrapped around me in front and the left wrapped over it, tucked around my torso and under my legs so it wouldn't flap open, and secured like an under-the-arms toga high on my right side with a safety pin. Its excess length at my feet was tucked between them like the end of a taco shell in a burrito. I wore whatever shirts I was wearing over the top of the sheet.

When I was up my helper would make me food. I needed no help to eat but did have my bread buttered and my meat cut. For balance I always leaned on my right arm, and everything I did I did 1-handed. (I'm leaning on my right arm now to type, typing with a peg I hold in my left hand.) In my chair, for years by the time Dorothea began taking care of me, I was functional and independent, and since summer 1978 when I’d gotten my first effective power chair I had gone wherever I wanted within a few miles of home. Dorothea shopped when necessary and would return twice after I was up, once about five with a meal she'd cooked at home, then at nine or so to help me to bed. We had our routine down.

But Dorothea, as she had warned, was no longer working for me, and, though Colleen had returned to Tucson, Nadine had hurt her shoulder and Lee her back. I approached Faith.

"Still interested in working for me?"

"Yes."

"Do you think you want to learn chores too?"

"I think so."

Chores wasn't a job for which I comfortably volunteered anyone and I didn't know how complete Faith's awareness was of what Dorothea had done. I did not bring up cocaine or my recent sex life, which I hoped would soon include the mirror. Jane had not moved it to the foot of my bed for me either night we’d been together; when I'd tried to ask, I'd failed. Could I, would I, ask Faith to place it?
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