LOVE NOTE. Epilogue. December 24,1990.

Christmas Eve 1990 I force myself to write. (What I have added to what I actually wrote today is in italic.)

I'm home, was released from the Cardiac Intensive Care Unit day before yesterday.

Each night I've waked my caretaker twice to help me drink. Sitting here at my computer I know that I am getting better; I insist I acknowledge it; I don't feel it.

I looked earlier today at what I wrote November 4 and then wrote a sentence for November 5 (the morning of November 5 my catheter was changed; that night I made Tape 98A) and one for November 6, the day that I collapsed. What I read from November 4 comprised clots of words without sense or significance.

I read as though my brain were damaged. Incredibly, it seems it isn't; written words, even my own, will make sense again. I was on a ventilator most of my first week in the hospital and then, because I seemed to be sufficiently recovered, the ventilator-tube was removed. I struggled all day to breathe on my own; Ruth sat at my bedside, broken-hearted and awed. That evening, exhausted, I asked (and still remember asking) that the tube be replaced, and for the next three weeks it seemed to my family, friends, and doctors likelier than not that I was dying. My heart was catheterized, my lungs probed as reasons for my failure to respond were sought. None was found.

Ruth had arrived November 8, the day I emerged from my initial coma. "What happened?" I asked her, and she told me what she had been told, that I'd suffered what had been described to her as a fatal arrhythmia. I'd done the last cocaine I ever would on the night of November 5, slept, and after chores were done November 6 had passed out as Ginette was getting me up at 10 A.M.

Faith, Kyra, and Kay are taking care of me, one or the other always with me. Ginette will help when she returns from Seattle. [I](Faith and Throck had moved out of my garden house soon after I returned from New York in 1988; a month after that Kay and her boyfriend, who managed Throck's band, had moved in with them, and a few months later Kay had begun helping to care for me. After Kay and Faith quarreled in 1989 Faith, for a time, quit, and Kay's friend Ginette ((Raythen too—but that is another story) took her place. Faith and Throck eventually moved back into the garden house and Faith returned to work. Kyra had only recently trained to fill in if needed but had not yet soloed. Kay and Ginette had set me up for my somewhat evolved mirror play; Kyra had not, and November 5, 1990, my last Love-Note night, I had consciously avoided fantasizing her doing so.)

Two friends from Godwin are also staying with me but, completely dependent and still in pain, I depend on my young team and, in spite of myself, exclude my old friends. I can barely speak in a hoarse whisper. I make sense when I talk—as I often didn't on the ICU--but am still emotionally broken and physically terribly weak.

This has been an ordeal. I aspirated into my lungs when I arrested and am still recovering from that.

I write what I have been told, remember nothing of what happened November 6 after I passed out, little of what happened in the hospital. Before I collapsed Ginette and I had smoked and chatted. I drew a green face with a red dot above its mouth in my notebook, jotted that I'd said to Ginette, "I wish this drug didn't leave me so hung-over," and then wrote, But under the lethargy, the weariness, was energy, last night's confidence intact. Sitting at the side of the bed, reaching for the trapeze to transfer from bed to chair, I told Ginette that I felt dizzy and fell back onto the bed.

"Arthur, you're scaring me," she said. My eyes were open, the pupils rolled up and hidden under the lids.

She raced through the house and out the backdoor, down the steps, and up the walk to bang on Faith’s and Throck's door.

"Just a minute," Faith called.

"Come. Come quick. He isn't breathing."

Faith, who was alone and had been naked when she'd heard the knock, opened her door before she had her bathrobe all the way on.

"What?"

Ginette grabbed at her and turned, pulling her by the bathrobe. "He just fell back and isn't moving."

When Faith, ahead of Ginette now, reached me, I lay unconscious on my back. My belly, huge in the way of old quads anyway, seemed bloated beyond belief. Faith put her lips to mine and began CPR. After calling 9-1-1 Ginette put her hands on my chest and felt my heart thump once, twice, stop, then, after a long pause, again beat sluggishly. She seemed to Faith to lean on my belly.

"She made you throw up into your lung," Faith, much later, said to me. "You threw up into my mouth, too. I couldn't get rid of the taste for weeks."

Faith's bathrobe was open by the time the paramedics arrived, twenty or twenty-five minutes after I had lost consciousness. I was naked except for socks and Ginette was wearing her purple velvet ankle-length dress. The paramedics saw nymphs and a dying faun, shooed the nymphs, threw the faun from the bed to the floor (chipping my front teeth and cracking two of my ribs, unless that happened later) and shocked my heart back to a normal rhythm. They knew that even if they got me to the ER with a heartbeat the odds were more than ten to one I wouldn't leave the hospital alive.[/color]

I'm on mind drugs I don't like called Trazidone and Atavan. I don't know whether they control or contribute to my anxiety, from which I'm never safe, or my depression. My anxiety is intermittent, my depression constant.
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[I]I was put back to bed at 1 P.M. for respiratory therapy and a nap and gotten up again at five. I again forced myself to the keyboard.

The present is not unbearable, just terrifically unattractive. I lack desire and vitality.

I was very happy to be out of the hospital except that I wasn't happy at all. I felt no joy. I knew the fact that I was home brought joy to Florence, Ruth, my brothers, all those who loved me.

They are still euphoric I am saved, alive, even home now.

The first pleasure I would know would be tomorrow, Christmas day, when I called Ruth.

"Arthur!" she would say, and I would feel her joy like a jolt from another world.

"You shouldn't have brought me back," I said to Faith when I saw her a week after she’d saved me. I needed to say it, likely as it was that she would take it as complaint rather than recognize it as a grim joke that I felt compelled to share.

"You should have let me go," I said.

Saying it to her is one of the few incidents of that week that I remember. She couldn't believe (which is to say believed) I was criticizing her for helping me. She loved me. She hadn't wanted me to die. She'd done everything she could and more, her stamina surprising her. She'd been wrong? She felt I was cruel and ungrateful.

I guess that she was right to save me. This will become part of my life, merely another survival story. Now, though, I'm still wasted. I laugh; I eat.

I don't feel like laughing, laugh only because it is possible to laugh, not because anything is funny or feels good; eat because intellectually I know that not to eat will prolong this stage of my recuperation. I want out of the misery in which I find myself; until I am out I will not, it seems cannot, pretend to be.

I function. My teeth feel like someone else's and my gums are sore; I flinch whenever I am touched. Humanness seems unattractive, life a punishment. Not a punishment for anything in particular--gratuitous punishment. My bite doesn't meet as it did before my teeth were chipped. The canella through which I receive oxygen 24 hours a day hurts my nostrils.

But I can type.

"I want to die," I spelled out for my hospital visitors. "Get me out of here," I spelled for Jake, for Bert, not knowing I had spelled it before, not once but many times. My eyes rolled like those of a frightened horse. I piteously, imploringly, reached my free arm over the railing of my hospital bed.

"ICU psychosis," my visitors were told.

Unable to speak, I pointed to letters on a board: K-E-V-O-R-K-I-A-N.

I am healing.

Respiratory therapy continues at home, a 4-times-daily chore I loathe; no one likes it but it is done religiously. The oxygen tube is taken from my nose and I am hooked to a compressor through which I breathe a drug for five minutes. Then the machine is turned off and I am turned on my right side so my left lung can be systematically pounded. In the hospital it was both lungs so, clearly, I am better.

I try not to be rude, try not to suck my helpers into my bored diminished world. Outside it, they will help to bring me out.

(I hoped that I might write spare sentences that would convey the bleakness that I felt even as drop by drop the healing, unfelt, filled me.

(Tomorrow I would write: I continue sore everywhere. Am I, though, stronger today? I suspect I am. Last night I watched The Silver Chair, part of C. S. Lewis' Narnia Chronicles. It's an adventure, and for kids. The despair in it--for it is there--is muted? It didn’t seem so to me. I watched a scene in which the heroine, a girl, is too big to squeeze through a tunnel and, unable to move further forward, discovers she cannot go backwards either. I couldn't concentrate on watching, and my summary of the distressing incident is likely inaccurate; my description of my mental state is not. Her situation was mine, her panicked suffering too awful to watch. Overwhelmed, I was about to call to have the TV turned off when I realized how much I feared silence. What I'm doing now is an adventure. The worse I feel, the greater the adventure.)

Tomorrow I will write.

THE END OF LOVE NOTE
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To go to the THE HEALING & LOVE NOTE DISCUSSION FORUM click here. When I began LOVE NOTE there was almost no available discussion of SCI sexuality. Now there is quite a bit, here on Simon's board and elsewhere. I consider myself lucky that the internet and webcams were not at my disposal in 1987-8, because it seems very likely to me that I would have attempted to put at least some of my love play on the net, where it might remain to this day. Oh my. I'll likely respond to any comment by any reader. When I began posting LOVE NOTE I worried that I might influence some of you with SCI to try sex with cocaine, a combination that has a positive outcome only, I suspect, for a limited period of time, if that. (Let me add here that my present cardiologist believes my arrhythmias are a result of innumerable miscroscopic heart infarcts caused by cocaine use. He has offered no proof, but it seems a not unreasonable supposition in the absence of evidence to the contrary.)

I've been surprised that no one has objected to the book's content but, as of my posting the Epilogue, no one has. In fact, no one has commented on the substance of the book at all, no one with SCI, no perhaps interested sexual researcher, no greedy agent. If anyone does, I'll try to respond. Thank you all for reading, and good luck.