LOVE NOTE Chapter 11: July 23-29, 1998. Part ii.

When I waked July 24 my bladder or penis, whatever was hurting, hurt almost as badly as it had at its worst last night; Faith, though she had a fever and headache and was nauseous, assured me that she was ready to learn to change the catheter. We decided to do it at 8 P. M., Hettie assisting. Joe had said he'd help anytime, too. He knew the procedure because he'd been catheterized after a car accident year before last, and I appreciated the offer. At 6:30 P.M. Faith began throwing up and I decided to delay the change another day.

The next day she was still sick but, about 5 P.M., said she was functional if not well and asked when I'd like the change. "Whenever you feel like you'll have a healthy enough half hour," I said.

"How about now?"

"Good," I said. The phone rang and it was Hettie, asking about plans for the change. "How about now?" I said.

"I'll be right there," she said.

Faith helped me to bed and brought me the notebook in which I had a list of cathing equipment. I hadn't initiated a new changer since Estelle in 1982, when each change had been accompanied by blood-pressure spikes and, sometimes, pounding headaches. These symptomatic changes had begun in the late 1970s and continued until 1983, the year I had discovered and consulted Dr. Lars. My symptoms, he told me, were of autonomic dysreflexia; he said that I could avoid them by using lidocaine to anesthetize my bladder and urethra during changes.

This was the equipment I now used: an 18-French 5-cc balloon Foley catheter; one catheter-change tray, the contents of which included a syringe filled with 10 ccs of sterile water, Betadine swabs, pads that could be lain out to create a sterile field, and two sterile gloves; a 60-cc syringe, a 3-cc syringe, and two needles, all sterile; a tube of sterile lidocaine jelly and a bottle of sterile lidocaine 1% solution; a 50-cc bottle of sterile water and a 30-cc bottle of injectable Demerol; a Kelly clamp; cotton balls; rubbing alcohol; scissors; extra sterile gloves and catheters; a bowl; and two new sterile drainage bags. Faith had opened the catheter-change tray by the time Hettie arrived; the equipment, including a still-packaged green 16-inch long catheter, was on the hospital table on which Storris and I played chess.

"Ready to play doctor with us?" I asked.

"Ready," Hettie said.

"Okay," I said, addressing my team, "I'll tell you how to get started and then run you through the whole procedure before we start." I outlined what we’d do and then returned to the beginning.

"Here Hettie," I said, "find the big syringe on the table there. When Faith unwrapped it she touched its outside, the part that's not on the sterile field now, and that's the part you should pick it up by." I was lying on my back and didn't see Hettie pick up the wrong syringe. I continued: "Okay, see those two needles? These syringes are called Luer locks. You take one of the needles—they're identical--and attach it to the end of the syringe and. . . ." I pulled myself up to see how she was doing. "No, the biggest syringe. When you put the one you have in your hand down make sure the end the needle will go in doesn't touch anything."

"Oh, this big one?"

"That's it."

"Here," Faith said. She took the large syringe, removed its plastic tip, and handed it back to Hettie, who had unpackaged the needle herself.

"See how the needle can be attached?" I said.

"Like this?"

"That's right. Now give the needle a half twist, so it locks."

"Presto!" she said.

"Okay, just hold on to that for a minute. You can touch any part of it except the needle, which has to stay sterile.

"Now Faith, swab off the tops of the sterile water bottle and the 1-percent lidocaine bottle using a cottonball with rubbing alcohol on it." I watched as she did as I directed. "Good. You should go ahead and swab the top of the Demerol with alcohol too.

"Hettie, draw the empty syringe's plunger back to the 20 cc.-mark, insert the needle through the top of the sterile-water container and into the sterile water, depress the plunger to zero, then draw out 20 ccs. of water."

"Got it."

"Now insert the needle into the lidocaine vial and draw out 2 ccs and shake the syringe a little. That'll mix the water and lidocaine you'll use to irrigate and anesthetize my bladder."

“Why the anesthetic?" Hettie asked. "I thought you didn’t feel.”

“That's the same question I asked the doctor who taught me this. My understanding, which I assume is inexact, is that despite the scar tissue in my spinal cord my nerve receptors themselves are fine. What happens when they’re not numbed is that my autonomic nervous system, which is independent of my spinal cord, raises my blood pressure in response to signals from the receptors, but the signal to lower it appropriately originates in my brain and the signals that should come down my cord don’t get to where they’d have an effect. I don't feel, so the numbing isn’t to avoid pain; it’s to avoid raising my blood pressure because my body's way of lowering it is screwed up.”

"Sounds good to me."

"Okay, moving right along. See how the catheter that's in me divides in a Y at the top? That's because it has two channels, one for urine and one to inflate or deflate the balloon that holds the catheter inside my bladder. The drainage-bag tubing is attached to the catheter's urine-channel, so before you can irrigate you have to take the clear drainage-bag tube off."

"They're really jammed together tight," Faith said, trying to disconnect the tubes from one another.

"They should be," I said, meaning to imply that after we were done and the new bag on, its tube should go as far into the catheter as this one's did. "If you don't put them together really tight they'll accidentally come apart, later if not sooner."

"There," she said as she separated the tubes.

"The old drainage bag you can just empty and throw away.

"Hettie, now you take the needle off the syringe and insert the syringe tip into the tip of the catheter where it was connected to the drainage bag and gradually introduce the irrigating solution into my bladder."

"Like this?"

"Exactly. Don't put quite all of it in so you don't introduce any air, though I'm not sure that matters. You can put it in faster than that. Good. Now you use the Kelly clamp to clip the channel closed so neither urine nor the lidocaine solution can get out and the lidocaine will numb my bladder. Clip it above the Y so you don't damage the channel that leads to the balloon. Clamp here. Good.”

“What happens if you damage the balloon channel?” Hettie said.

“If it's crimped you can't deflate the balloon, which results in what's called a recalcitrant catheter.”

“What happens then?”

“There are ways to make it deflate, but they’re all a little drastic. I'll tell you when you're older."

"Are we done with the irrigating syringe?"

"Yes.

"Okay. The next part is unorthodox, but it's important to me. First you attach the second needle to the 3 cc syringe and then draw half a cc of Demerol out of the Demerol bottle and give the syringe to Faith. Doing Demerol during catheter changes helped control my symptoms before I learned to use the lidocaine. I still do it because I like it and it does no harm. I don't like catheter changes, and doing Demerol gives them an emotional upside."

I leaned as far as I could to my right to raise up my left buttock.

"What you do is, imagine each side of my butt is a square divided into four parts; give me the shot in the upper outer quadrant, out here." I touched where I meant. The sciatic nerve could be hit if the shot were aimed more randomly.

"I'll try to find a fleshy place," said Faith. "You're so bony."

Giving a shot, I later learned, was what both Faith and Hettie had most feared. I knew Faith would have no trouble, but it made me nervous too. I looked away. Despite my lack of sensation, I seemed to feel the heavy fluid going into me, which I didn't like. It had never hurt. "Okay," said Faith.

"Done?"

"Yup."

"Okay. Now, what we do is, Hettie, you'll strip the cellophane packaging completely off the catheter so it just lies on the long strip of stiff paper it's on now. Here, show it to me." She did. "See how it'll come off?"

"Yes."

"Okay, then. After that's off or all but off, so the length of the catheter's exposed, you put it and the paper it's on on an untouched part of the sterile field on the table. Now, the field is sterile, and so is the catheter and the paper it was on inside the catheter package, but any place you touch them with your bare hands won't be. If you touch the catheter with your ungloved hands or anything else unsterile, we just throw it away and go to another. We have two more.

"Next, you take the tube of lidocaine jelly, squeeze a little out of the top into the bowl to get rid of it and get at what's under it, which we know is sterile, and then squeeze lots of it on the catheter from the tip that'll go in me to about two-thirds of the way up. That's both the lubrication and an anesthetic for my urethra. And don't let the top of the jelly tube touch the catheter."

"Should I use the jelly now?"

"Go ahead and put it on." She did, carefully. "Now, you see how the catheter looks before it's in me. It'll slide into the tip of my penis, through my urethra, into my bladder. You may feel a little resistance as it goes past my prostate but not much. Then after it's in my bladder, you insert eight ccs of sterile water from the pre-loaded 10-cc syringe that's on the table. You insert the sterile water into the non-urine channel, the one with the red cap. You just press the syringe tip into the plastic receptacle that extends out beyond the red cap. The inflated balloon keeps the catheter from sliding out once it’s in my bladder.

"Faith, it's time for you to put on the sterile gloves. The first one's easy to get on, but you may need help with the second and you, Hettie, can help her with it. You can touch its inside but not its outside, and after you've touched its inside, she can't touch it where you have with her already-gloved hand. If we breach sterility, there are extra gloves."

"Is she going to cut off the end of the catheter that's already in you?" Faith asked. Cutting the arm of the Y not closed off by the clamp would let the water in the balloon drain.

"Yes. There's a preferred way, but snipping off the end is easiest so it's what we'll do."

She nodded.

"After Faith has the gloves on," I continued, "she’ll spread the lubricant more evenly all around the catheter and then hold the catheter ready to put it in, but before that--Hettie, take the clamp off, the lidocaine's had time to numb me, we can do that now. Here, use the bowl to catch what comes out." Hettie released the clamp and the solution used for the irrigation drained. "Done?"

"Done."

"Okay. Now, after Faith's ready, you'll use the scissors to cut the catheter right here, on this side of the Y, so the balloon deflates. You can use the same bowl to catch the water or just let it drain onto the underpad. It's only a few ccs. Then I'll pull out the catheter by myself and you'll use the Betadine swabs, stroking away from the opening in my penis. Here, let's put one of the new big pillows behind my head and set up the mirror so I can see what's going on in case anything unexpected happens." It was done, medically necessary and sensible, as free of sexuality as Hettie's offer of assistance had been, though of course the mirror had overtones to which Faith and I were sensitive.

"After the catheter's out, we move as promptly as we can without rushing," I said. "You, Hettie, after you use the Betadine, hold my penis straight up, so Faith has a clear shot. Hold it on its sides, not back to front, so you don't constrict the urethra. Then, after the catheter's in to within an inch or two of the Y, one of you has to hold it in, you Hettie, I guess, while Faith gets the 10-cc syringe. My bladder'll try to force the new catheter out, and it's real important you not let it. One time we tried to inflate the catheter when the balloon was in my urethra and it required an ER trip to stop the bleeding, but there's no risk of that if you hold it in. Faith, you'll put 8 ccs of water in, through this red part. You just press the tip in and once it’s in inject the water. Put 8 ccs in, so there's 2 left in your syringe, and then gently draw the catheter back till you feel it lodge at the neck of the bladder. And that’s it, we’re done as soon as you attach the new drainage bag and see urine in the tube, which will assure us the channel is open."

It was done, the catheter in, a little urine already visible in the plastic tubing. I was rinsed off and the blue underpad that had gotten wet was replaced with a dry new one.

"Do you feel okay?" asked Faith.

"I'm fine. I'm sweating a little, which is a mild dysreflexic response, like goose bumps, but I can feel the Demerol too. No problems."

"Am I old enough yet?" Hettie said.

"Oh, a recalcitrant catheter. You can deflate the balloon at home but the best way is go to the ER and have the doc use a fluoroscope that lets him see to stick a long needle through the abdomen and bladder and into the balloon. The doctor pierces the balloon, the water just empties into the bladder, and he, she, whichever removes the catheter. Seeing the horse needle is unsettling but the only time I had the procedure done it was quick and painless. If you don't have access to a fluoroscope you can inject alcohol into the balloon channel, which dissolves the latex that the catheter, including the balloon, is made of, but when we did it that way I was in excruciating pain for 72 hours from really violent dysreflexia because of how the alcohol irritated my bladder. My top blood-pressure number hit 300 once and was 250 a bunch. It would drop back between spasms but most of the first two days the spasms happened at intervals from ten minutes to an hour. It was really bad. Another time, the third recalcitrant catheter--I love that term—, we used sterile mineral oil instead of alcohol and avoided the dysreflexia because the mineral oil didn't irritate my bladder. I don't know why the balloon dissolves before the rest of the catheter, maybe it's stretched thinner, but it always has when I've done it. I'd go to a lot of trouble and take some chances to avoid using alcohol again."

After the catheter change I remained propped on my pillows, uncovered, as Faith left and Angus came in with Joe. Dee soon joined us. Faith had moved the mirror away from the foot of my bed before she left.

I didn't usually lie naked and uncovered for an evening with my friends. They'd all helped me, all been with me when I was naked, but not for as long as an hour or two. (None of them had done chores.) I had asked Joe, shortly after Dee arrived, to put my sheet over me, and he’d said he would but then hadn't; now and then I consciously moved my left leg away from my right to increase my exposure. I didn't touch my penis; I did think of touching it.

(Back in Tucson in October I read Part IV of Love Note, imagining I might work on it. I hated it. I'd been inside my subject, not seen it from without, and what I'd written was quicksand to my hopes. There had, though, been one part that I thought had worked--the July-25 catheter-change. The night of the day I read the first-draft version of what you just read, I'd a catheter-change fantasy I knew must happen. Unlike most such fantasies, it soon did, and the elapsed time between the next nine changes shortened dramatically. My in-the-flesh partner the first two times would be Estelle, the other seven Faith. The creative changes, as I called them, only ended when I contracted epididymitis, soon after which I stopped urethral and began suprapubic catheterization.)

By the time Dee and Joe left at eight thirty Steve had joined Angus, Hettie, and me in my bedroom. Hettie was rattaning a back and seat into a chair she'd had for two years but had not begun working on until she'd brought it here a week ago. Were I alone with her and Angus, I thought, I'd talk to them about her drawing me as I lay feeling, but when Steve left I didn't allude to my secret life.

I still knew after they left that I could have and wrote about it. I wrote as though I were certain I sooner or later would talk--as I was--even though I was as certain the certainty was fleeting. I wrote for Writerfellow, who would not easily recreate my mad certainty the love of which I fantasized was possible nor do justice to my joyous and repetitive play if he had no notes from now, the past. Then I made another unusable tape, loved making it.
ii

When I waked July 24 my bladder or penis, whatever was hurting, hurt almost as badly as it had at its worst last night; Faith, though she had a fever and headache and was nauseous, assured me that she was ready to learn to change the catheter. We decided to do it at 8 P. M., Hettie assisting. Joe had said he'd help anytime, too. He knew the procedure because he'd been catheterized after a car accident year before last, and I appreciated the offer. At 6:30 P.M. Faith began throwing up and I decided to delay the change another day.

The next day she was still sick but, about 5 P.M., said she was functional if not well and asked when I'd like the change. "Whenever you feel like you'll have a healthy enough half hour," I said.

"How about now?"

"Good," I said. The phone rang and it was Hettie, asking about plans for the change. "How about now?" I said.

"I'll be right there," she said.

Faith helped me to bed and brought me the notebook in which I had a list of cathing equipment. I hadn't initiated a new changer since Estelle in 1982, when each change had been accompanied by blood-pressure spikes and, sometimes, pounding headaches. These symptomatic changes had begun in the late 1970s and continued until 1983, the year I had discovered and consulted Dr. Lars. My symptoms, he told me, were of autonomic dysreflexia; he said that I could avoid them by using lidocaine to anesthetize my bladder and urethra during changes.

This was the equipment I now used: an 18-French 5-cc balloon Foley catheter; one catheter-change tray, the contents of which included a syringe filled with 10 ccs of sterile water, Betadine swabs, pads that could be lain out to create a sterile field, and two sterile gloves; a 60-cc syringe, a 3-cc syringe, and two needles, all sterile; a tube of sterile lidocaine jelly and a bottle of sterile lidocaine 1% solution; a 50-cc bottle of sterile water and a 30-cc bottle of injectable Demerol; a Kelly clamp; cotton balls; rubbing alcohol; scissors; extra sterile gloves and catheters; a bowl; and two new sterile drainage bags. Faith had opened the catheter-change tray by the time Hettie arrived; the equipment, including a still-packaged green 16-inch long catheter, was on the hospital table on which Storris and I played chess.

"Ready to play doctor with us?" I asked.

"Ready," Hettie said.

"Okay," I said, addressing my team, "I'll tell you how to get started and then run you through the whole procedure before we start." I outlined what we’d do and then returned to the beginning.

"Here Hettie," I said, "find the big syringe on the table there. When Faith unwrapped it she touched its outside, the part that's not on the sterile field now, and that's the part you should pick it up by." I was lying on my back and didn't see Hettie pick up the wrong syringe. I continued: "Okay, see those two needles? These syringes are called Luer locks. You take one of the needles—they're identical--and attach it to the end of the syringe and. . . ." I pulled myself up to see how she was doing. "No, the biggest syringe. When you put the one you have in your hand down make sure the end the needle will go in doesn't touch anything."

"Oh, this big one?"

"That's it."

"Here," Faith said. She took the large syringe, removed its plastic tip, and handed it back to Hettie, who had unpackaged the needle herself.

"See how the needle can be attached?" I said.

"Like this?"

"That's right. Now give the needle a half twist, so it locks."

"Presto!" she said.

"Okay, just hold on to that for a minute. You can touch any part of it except the needle, which has to stay sterile.

"Now Faith, swab off the tops of the sterile water bottle and the 1-percent lidocaine bottle using a cottonball with rubbing alcohol on it." I watched as she did as I directed. "Good. You should go ahead and swab the top of the Demerol with alcohol too.

"Hettie, draw the empty syringe's plunger back to the 20 cc.-mark, insert the needle through the top of the sterile-water container and into the sterile water, depress the plunger to zero, then draw out 20 ccs. of water."

"Got it."

"Now insert the needle into the lidocaine vial and draw out 2 ccs and shake the syringe a little. That'll mix the water and lidocaine you'll use to irrigate and anesthetize my bladder."

“Why the anesthetic?" Hettie asked. "I thought you didn’t feel.”

“That's the same question I asked the doctor who taught me this. My understanding, which I assume is inexact, is that despite the scar tissue in my spinal cord my nerve receptors themselves are fine. What happens when they’re not numbed is that my autonomic nervous system, which is independent of my spinal cord, raises my blood pressure in response to signals from the receptors, but the signal to lower it appropriately originates in my brain and the signals that should come down my cord don’t get to where they’d have an effect. I don't feel, so the numbing isn’t to avoid pain; it’s to avoid raising my blood pressure because my body's way of lowering it is screwed up.”

"Sounds good to me."

"Okay, moving right along. See how the catheter that's in me divides in a Y at the top? That's because it has two channels, one for urine and one to inflate or deflate the balloon that holds the catheter inside my bladder. The drainage-bag tubing is attached to the catheter's urine-channel, so before you can irrigate you have to take the clear drainage-bag tube off."

"They're really jammed together tight," Faith said, trying to disconnect the tubes from one another.

"They should be," I said, meaning to imply that after we were done and the new bag on, its tube should go as far into the catheter as this one's did. "If you don't put them together really tight they'll accidentally come apart, later if not sooner."

"There," she said as she separated the tubes.

"The old drainage bag you can just empty and throw away.

"Hettie, now you take the needle off the syringe and insert the syringe tip into the tip of the catheter where it was connected to the drainage bag and gradually introduce the irrigating solution into my bladder."

"Like this?"

"Exactly. Don't put quite all of it in so you don't introduce any air, though I'm not sure that matters. You can put it in faster than that. Good. Now you use the Kelly clamp to clip the channel closed so neither urine nor the lidocaine solution can get out and the lidocaine will numb my bladder. Clip it above the Y so you don't damage the channel that leads to the balloon. Clamp here. Good.”

“What happens if you damage the balloon channel?” Hettie said.

“If it's crimped you can't deflate the balloon, which results in what's called a recalcitrant catheter.”

“What happens then?”

“There are ways to make it deflate, but they’re all a little drastic. I'll tell you when you're older."

"Are we done with the irrigating syringe?"

"Yes.

"Okay. The next part is unorthodox, but it's important to me. First you attach the second needle to the 3 cc syringe and then draw half a cc of Demerol out of the Demerol bottle and give the syringe to Faith. Doing Demerol during catheter changes helped control my symptoms before I learned to use the lidocaine. I still do it because I like it and it does no harm. I don't like catheter changes, and doing Demerol gives them an emotional upside."

I leaned as far as I could to my right to raise up my left buttock.

"What you do is, imagine each side of my butt is a square divided into four parts; give me the shot in the upper outer quadrant, out here." I touched where I meant. The sciatic nerve could be hit if the shot were aimed more randomly.

"I'll try to find a fleshy place," said Faith. "You're so bony."

Giving a shot, I later learned, was what both Faith and Hettie had most feared. I knew Faith would have no trouble, but it made me nervous too. I looked away. Despite my lack of sensation, I seemed to feel the heavy fluid going into me, which I didn't like. It had never hurt. "Okay," said Faith.

"Done?"

"Yup."

"Okay. Now, what we do is, Hettie, you'll strip the cellophane packaging completely off the catheter so it just lies on the long strip of stiff paper it's on now. Here, show it to me." She did. "See how it'll come off?"

"Yes."

"Okay, then. After that's off or all but off, so the length of the catheter's exposed, you put it and the paper it's on on an untouched part of the sterile field on the table. Now, the field is sterile, and so is the catheter and the paper it was on inside the catheter package, but any place you touch them with your bare hands won't be. If you touch the catheter with your ungloved hands or anything else unsterile, we just throw it away and go to another. We have two more.

"Next, you take the tube of lidocaine jelly, squeeze a little out of the top into the bowl to get rid of it and get at what's under it, which we know is sterile, and then squeeze lots of it on the catheter from the tip that'll go in me to about two-thirds of the way up. That's both the lubrication and an anesthetic for my urethra. And don't let the top of the jelly tube touch the catheter."

"Should I use the jelly now?"

"Go ahead and put it on." She did, carefully. "Now, you see how the catheter looks before it's in me. It'll slide into the tip of my penis, through my urethra, into my bladder. You may feel a little resistance as it goes past my prostate but not much. Then after it's in my bladder, you insert eight ccs of sterile water from the pre-loaded 10-cc syringe that's on the table. You insert the sterile water into the non-urine channel, the one with the red cap. You just press the syringe tip into the plastic receptacle that extends out beyond the red cap. The inflated balloon keeps the catheter from sliding out once it’s in my bladder.

"Faith, it's time for you to put on the sterile gloves. The first one's easy to get on, but you may need help with the second and you, Hettie, can help her with it. You can touch its inside but not its outside, and after you've touched its inside, she can't touch it where you have with her already-gloved hand. If we breach sterility, there are extra gloves."

"Is she going to cut off the end of the catheter that's already in you?" Faith asked. Cutting the arm of the Y not closed off by the clamp would let the water in the balloon drain.

"Yes. There's a preferred way, but snipping off the end is easiest so it's what we'll do."

She nodded.

"After Faith has the gloves on," I continued, "she’ll spread the lubricant more evenly all around the catheter and then hold the catheter ready to put it in, but before that--Hettie, take the clamp off, the lidocaine's had time to numb me, we can do that now. Here, use the bowl to catch what comes out." Hettie released the clamp and the solution used for the irrigation drained. "Done?"

"Done."

"Okay. Now, after Faith's ready, you'll use the scissors to cut the catheter right here, on this side of the Y, so the balloon deflates. You can use the same bowl to catch the water or just let it drain onto the underpad. It's only a few ccs. Then I'll pull out the catheter by myself and you'll use the Betadine swabs, stroking away from the opening in my penis. Here, let's put one of the new big pillows behind my head and set up the mirror so I can see what's going on in case anything unexpected happens." It was done, medically necessary and sensible, as free of sexuality as Hettie's offer of assistance had been, though of course the mirror had overtones to which Faith and I were sensitive.

"After the catheter's out, we move as promptly as we can without rushing," I said. "You, Hettie, after you use the Betadine, hold my penis straight up, so Faith has a clear shot. Hold it on its sides, not back to front, so you don't constrict the urethra. Then, after the catheter's in to within an inch or two of the Y, one of you has to hold it in, you Hettie, I guess, while Faith gets the 10-cc syringe. My bladder'll try to force the new catheter out, and it's real important you not let it. One time we tried to inflate the catheter when the balloon was in my urethra and it required an ER trip to stop the bleeding, but there's no risk of that if you hold it in. Faith, you'll put 8 ccs of water in, through this red part. You just press the tip in and once it’s in inject the water. Put 8 ccs in, so there's 2 left in your syringe, and then gently draw the catheter back till you feel it lodge at the neck of the bladder. And that’s it, we’re done as soon as you attach the new drainage bag and see urine in the tube, which will assure us the channel is open."

It was done, the catheter in, a little urine already visible in the plastic tubing. I was rinsed off and the blue underpad that had gotten wet was replaced with a dry new one.

"Do you feel okay?" asked Faith.

"I'm fine. I'm sweating a little, which is a mild dysreflexic response, like goose bumps, but I can feel the Demerol too. No problems."

"Am I old enough yet?" Hettie said.

"Oh, a recalcitrant catheter. You can deflate the balloon at home but the best way is go to the ER and have the doc use a fluoroscope that lets him see to stick a long needle through the abdomen and bladder and into the balloon. The doctor pierces the balloon, the water just empties into the bladder, and he, she, whichever removes the catheter. Seeing the horse needle is unsettling but the only time I had the procedure done it was quick and painless. If you don't have access to a fluoroscope you can inject alcohol into the balloon channel, which dissolves the latex that the catheter, including the balloon, is made of, but when we did it that way I was in excruciating pain for 72 hours from really violent dysreflexia because of how the alcohol irritated my bladder. My top blood-pressure number hit 300 once and was 250 a bunch. It would drop back between spasms but most of the first two days the spasms happened at intervals from ten minutes to an hour. It was really bad. Another time, the third recalcitrant catheter--I love that term—, we used sterile mineral oil instead of alcohol and avoided the dysreflexia because the mineral oil didn't irritate my bladder. I don't know why the balloon dissolves before the rest of the catheter, maybe it's stretched thinner, but it always has when I've done it. I'd go to a lot of trouble and take some chances to avoid using alcohol again."

After the catheter change I remained propped on my pillows, uncovered, as Faith left and Angus came in with Joe. Dee soon joined us. Faith had moved the mirror away from the foot of my bed before she left.

I didn't usually lie naked and uncovered for an evening with my friends. They'd all helped me, all been with me when I was naked, but not for as long as an hour or two. (None of them had done chores.) I had asked Joe, shortly after Dee arrived, to put my sheet over me, and he’d said he would but then hadn't; now and then I consciously moved my left leg away from my right to increase my exposure. I didn't touch my penis; I did think of touching it.

(Back in Tucson in October I read Part IV of Love Note, imagining I might work on it. I hated it. I'd been inside my subject, not seen it from without, and what I'd written was quicksand to my hopes. There had, though, been one part that I thought had worked--the July-25 catheter-change. The night of the day I read the first-draft version of what you just read, I'd a catheter-change fantasy I knew must happen. Unlike most such fantasies, it soon did, and the elapsed time between the next nine changes shortened dramatically. My in-the-flesh partner the first two times would be Estelle, the other seven Faith. The creative changes, as I called them, only ended when I contracted epididymitis, soon after which I stopped urethral and began suprapubic catheterization.)

By the time Dee and Joe left at eight thirty Steve had joined Angus, Hettie, and me in my bedroom. Hettie was rattaning a back and seat into a chair she'd had for two years but had not begun working on until she'd brought it here a week ago. Were I alone with her and Angus, I thought, I'd talk to them about her drawing me as I lay feeling, but when Steve left I didn't allude to my secret life.

I still knew after they left that I could have and wrote about it. I wrote as though I were certain I sooner or later would talk--as I was--even though I was as certain the certainty was fleeting. I wrote for Writerfellow, who would not easily recreate my mad certainty the love of which I fantasized was possible nor do justice to my joyous and repetitive play if he had no notes from now, the past. Then I made another unusable tape, loved making it.
ii

When I waked July 24 my bladder or penis, whatever was hurting, hurt almost as badly as it had at its worst last night; Faith, though she had a fever and headache and was nauseous, assured me that she was ready to learn to change the catheter. We decided to do it at 8 P. M., Hettie assisting. Joe had said he'd help anytime, too. He knew the procedure because he'd been catheterized after a car accident year before last, and I appreciated the offer. At 6:30 P.M. Faith began throwing up and I decided to delay the change another day.

The next day she was still sick but, about 5 P.M., said she was functional if not well and asked when I'd like the change. "Whenever you feel like you'll have a healthy enough half hour," I said.

"How about now?"

"Good," I said. The phone rang and it was Hettie, asking about plans for the change. "How about now?" I said.

"I'll be right there," she said.

Faith helped me to bed and brought me the notebook in which I had a list of cathing equipment. I hadn't initiated a new changer since Estelle in 1982, when each change had been accompanied by blood-pressure spikes and, sometimes, pounding headaches. These symptomatic changes had begun in the late 1970s and continued until 1983, the year I had discovered and consulted Dr. Lars. My symptoms, he told me, were of autonomic dysreflexia; he said that I could avoid them by using lidocaine to anesthetize my bladder and urethra during changes.

This was the equipment I now used: an 18-French 5-cc balloon Foley catheter; one catheter-change tray, the contents of which included a syringe filled with 10 ccs of sterile water, Betadine swabs, pads that could be lain out to create a sterile field, and two sterile gloves; a 60-cc syringe, a 3-cc syringe, and two needles, all sterile; a tube of sterile lidocaine jelly and a bottle of sterile lidocaine 1% solution; a 50-cc bottle of sterile water and a 30-cc bottle of injectable Demerol; a Kelly clamp; cotton balls; rubbing alcohol; scissors; extra sterile gloves and catheters; a bowl; and two new sterile drainage bags. Faith had opened the catheter-change tray by the time Hettie arrived; the equipment, including a still-packaged green 16-inch long catheter, was on the hospital table on which Storris and I played chess.

"Ready to play doctor with us?" I asked.

"Ready," Hettie said.

"Okay," I said, addressing my team, "I'll tell you how to get started and then run you through the whole procedure before we start." I outlined what we’d do and then returned to the beginning.

"Here Hettie," I said, "find the big syringe on the table there. When Faith unwrapped it she touched its outside, the part that's not on the sterile field now, and that's the part you should pick it up by." I was lying on my back and didn't see Hettie pick up the wrong syringe. I continued: "Okay, see those two needles? These syringes are called Luer locks. You take one of the needles—they're identical--and attach it to the end of the syringe and. . . ." I pulled myself up to see how she was doing. "No, the biggest syringe. When you put the one you have in your hand down make sure the end the needle will go in doesn't touch anything."

"Oh, this big one?"

"That's it."

"Here," Faith said. She took the large syringe, removed its plastic tip, and handed it back to Hettie, who had unpackaged the needle herself.

"See how the needle can be attached?" I said.

"Like this?"

"That's right. Now give the needle a half twist, so it locks."

"Presto!" she said.

"Okay, just hold on to that for a minute. You can touch any part of it except the needle, which has to stay sterile.

"Now Faith, swab off the tops of the sterile water bottle and the 1-percent lidocaine bottle using a cottonball with rubbing alcohol on it." I watched as she did as I directed. "Good. You should go ahead and swab the top of the Demerol with alcohol too.

"Hettie, draw the empty syringe's plunger back to the 20 cc.-mark, insert the needle through the top of the sterile-water container and into the sterile water, depress the plunger to zero, then draw out 20 ccs. of water."

"Got it."

"Now insert the needle into the lidocaine vial and draw out 2 ccs and shake the syringe a little. That'll mix the water and lidocaine you'll use to irrigate and anesthetize my bladder."

“Why the anesthetic?" Hettie asked. "I thought you didn’t feel.”

“That's the same question I asked the doctor who taught me this. My understanding, which I assume is inexact, is that despite the scar tissue in my spinal cord my nerve receptors themselves are fine. What happens when they’re not numbed is that my autonomic nervous system, which is independent of my spinal cord, raises my blood pressure in response to signals from the receptors, but the signal to lower it appropriately originates in my brain and the signals that should come down my cord don’t get to where they’d have an effect. I don't feel, so the numbing isn’t to avoid pain; it’s to avoid raising my blood pressure because my body's way of lowering it is screwed up.”

"Sounds good to me."

"Okay, moving right along. See how the catheter that's in me divides in a Y at the top? That's because it has two channels, one for urine and one to inflate or deflate the balloon that holds the catheter inside my bladder. The drainage-bag tubing is attached to the catheter's urine-channel, so before you can irrigate you have to take the clear drainage-bag tube off."

"They're really jammed together tight," Faith said, trying to disconnect the tubes from one another.

"They should be," I said, meaning to imply that after we were done and the new bag on, its tube should go as far into the catheter as this one's did. "If you don't put them together really tight they'll accidentally come apart, later if not sooner."

"There," she said as she separated the tubes.

"The old drainage bag you can just empty and throw away.

"Hettie, now you take the needle off the syringe and insert the syringe tip into the tip of the catheter where it was connected to the drainage bag and gradually introduce the irrigating solution into my bladder."

"Like this?"

"Exactly. Don't put quite all of it in so you don't introduce any air, though I'm not sure that matters. You can put it in faster than that. Good. Now you use the Kelly clamp to clip the channel closed so neither urine nor the lidocaine solution can get out and the lidocaine will numb my bladder. Clip it above the Y so you don't damage the channel that leads to the balloon. Clamp here. Good.”

“What happens if you damage the balloon channel?” Hettie said.

“If it's crimped you can't deflate the balloon, which results in what's called a recalcitrant catheter.”

“What happens then?”

“There are ways to make it deflate, but they’re all a little drastic. I'll tell you when you're older."

"Are we done with the irrigating syringe?"

"Yes.

"Okay. The next part is unorthodox, but it's important to me. First you attach the second needle to the 3 cc syringe and then draw half a cc of Demerol out of the Demerol bottle and give the syringe to Faith. Doing Demerol during catheter changes helped control my symptoms before I learned to use the lidocaine. I still do it because I like it and it does no harm. I don't like catheter changes, and doing Demerol gives them an emotional upside."

I leaned as far as I could to my right to raise up my left buttock.

"What you do is, imagine each side of my butt is a square divided into four parts; give me the shot in the upper outer quadrant, out here." I touched where I meant. The sciatic nerve could be hit if the shot were aimed more randomly.

"I'll try to find a fleshy place," said Faith. "You're so bony."

Giving a shot, I later learned, was what both Faith and Hettie had most feared. I knew Faith would have no trouble, but it made me nervous too. I looked away. Despite my lack of sensation, I seemed to feel the heavy fluid going into me, which I didn't like. It had never hurt. "Okay," said Faith.

"Done?"

"Yup."

"Okay. Now, what we do is, Hettie, you'll strip the cellophane packaging completely off the catheter so it just lies on the long strip of stiff paper it's on now. Here, show it to me." She did. "See how it'll come off?"

"Yes."

"Okay, then. After that's off or all but off, so the length of the catheter's exposed, you put it and the paper it's on on an untouched part of the sterile field on the table. Now, the field is sterile, and so is the catheter and the paper it was on inside the catheter package, but any place you touch them with your bare hands won't be. If you touch the catheter with your ungloved hands or anything else unsterile, we just throw it away and go to another. We have two more.

"Next, you take the tube of lidocaine jelly, squeeze a little out of the top into the bowl to get rid of it and get at what's under it, which we know is sterile, and then squeeze lots of it on the catheter from the tip that'll go in me to about two-thirds of the way up. That's both the lubrication and an anesthetic for my urethra. And don't let the top of the jelly tube touch the catheter."

"Should I use the jelly now?"

"Go ahead and put it on." She did, carefully. "Now, you see how the catheter looks before it's in me. It'll slide into the tip of my penis, through my urethra, into my bladder. You may feel a little resistance as it goes past my prostate but not much. Then after it's in my bladder, you insert eight ccs of sterile water from the pre-loaded 10-cc syringe that's on the table. You insert the sterile water into the non-urine channel, the one with the red cap. You just press the syringe tip into the plastic receptacle that extends out beyond the red cap. The inflated balloon keeps the catheter from sliding out once it’s in my bladder.

"Faith, it's time for you to put on the sterile gloves. The first one's easy to get on, but you may need help with the second and you, Hettie, can help her with it. You can touch its inside but not its outside, and after you've touched its inside, she can't touch it where you have with her already-gloved hand. If we breach sterility, there are extra gloves."

"Is she going to cut off the end of the catheter that's already in you?" Faith asked. Cutting the arm of the Y not closed off by the clamp would let the water in the balloon drain.

"Yes. There's a preferred way, but snipping off the end is easiest so it's what we'll do."

She nodded.

"After Faith has the gloves on," I continued, "she’ll spread the lubricant more evenly all around the catheter and then hold the catheter ready to put it in, but before that--Hettie, take the clamp off, the lidocaine's had time to numb me, we can do that now. Here, use the bowl to catch what comes out." Hettie released the clamp and the solution used for the irrigation drained. "Done?"

"Done."

"Okay. Now, after Faith's ready, you'll use the scissors to cut the catheter right here, on this side of the Y, so the balloon deflates. You can use the same bowl to catch the water or just let it drain onto the underpad. It's only a few ccs. Then I'll pull out the catheter by myself and you'll use the Betadine swabs, stroking away from the opening in my penis. Here, let's put one of the new big pillows behind my head and set up the mirror so I can see what's going on in case anything unexpected happens." It was done, medically necessary and sensible, as free of sexuality as Hettie's offer of assistance had been, though of course the mirror had overtones to which Faith and I were sensitive.

"After the catheter's out, we move as promptly as we can without rushing," I said. "You, Hettie, after you use the Betadine, hold my penis straight up, so Faith has a clear shot. Hold it on its sides, not back to front, so you don't constrict the urethra. Then, after the catheter's in to within an inch or two of the Y, one of you has to hold it in, you Hettie, I guess, while Faith gets the 10-cc syringe. My bladder'll try to force the new catheter out, and it's real important you not let it. One time we tried to inflate the catheter when the balloon was in my urethra and it required an ER trip to stop the bleeding, but there's no risk of that if you hold it in. Faith, you'll put 8 ccs of water in, through this red part. You just press the tip in and once it’s in inject the water. Put 8 ccs in, so there's 2 left in your syringe, and then gently draw the catheter back till you feel it lodge at the neck of the bladder. And that’s it, we’re done as soon as you attach the new drainage bag and see urine in the tube, which will assure us the channel is open."

It was done, the catheter in, a little urine already visible in the plastic tubing. I was rinsed off and the blue underpad that had gotten wet was replaced with a dry new one.

"Do you feel okay?" asked Faith.

"I'm fine. I'm sweating a little, which is a mild dysreflexic response, like goose bumps, but I can feel the Demerol too. No problems."

"Am I old enough yet?" Hettie said.

"Oh, a recalcitrant catheter. You can deflate the balloon at home but the best way is go to the ER and have the doc use a fluoroscope that lets him see to stick a long needle through the abdomen and bladder and into the balloon. The doctor pierces the balloon, the water just empties into the bladder, and he, she, whichever removes the catheter. Seeing the horse needle is unsettling but the only time I had the procedure done it was quick and painless. If you don't have access to a fluoroscope you can inject alcohol into the balloon channel, which dissolves the latex that the catheter, including the balloon, is made of, but when we did it that way I was in excruciating pain for 72 hours from really violent dysreflexia because of how the alcohol irritated my bladder. My top blood-pressure number hit 300 once and was 250 a bunch. It would drop back between spasms but most of the first two days the spasms happened at intervals from ten minutes to an hour. It was really bad. Another time, the third recalcitrant catheter--I love that term—, we used sterile mineral oil instead of alcohol and avoided the dysreflexia because the mineral oil didn't irritate my bladder. I don't know why the balloon dissolves before the rest of the catheter, maybe it's stretched thinner, but it always has when I've done it. I'd go to a lot of trouble and take some chances to avoid using alcohol again."

After the catheter change I remained propped on my pillows, uncovered, as Faith left and Angus came in with Joe. Dee soon joined us. Faith had moved the mirror away from the foot of my bed before she left.

I didn't usually lie naked and uncovered for an evening with my friends. They'd all helped me, all been with me when I was naked, but not for as long as an hour or two. (None of them had done chores.) I had asked Joe, shortly after Dee arrived, to put my sheet over me, and he’d said he would but then hadn't; now and then I consciously moved my left leg away from my right to increase my exposure. I didn't touch my penis; I did think of touching it.

(Back in Tucson in October I read Part IV of Love Note, imagining I might work on it. I hated it. I'd been inside my subject, not seen it from without, and what I'd written was quicksand to my hopes. There had, though, been one part that I thought had worked--the July-25 catheter-change. The night of the day I read the first-draft version of what you just read, I'd a catheter-change fantasy I knew must happen. Unlike most such fantasies, it soon did, and the elapsed time between the next nine changes shortened dramatically. My in-the-flesh partner the first two times would be Estelle, the other seven Faith. The creative changes, as I called them, only ended when I contracted epididymitis, soon after which I stopped urethral and began suprapubic catheterization.)

By the time Dee and Joe left at eight thirty Steve had joined Angus, Hettie, and me in my bedroom. Hettie was rattaning a back and seat into a chair she'd had for two years but had not begun working on until she'd brought it here a week ago. Were I alone with her and Angus, I thought, I'd talk to them about her drawing me as I lay feeling, but when Steve left I didn't allude to my secret life.

I still knew after they left that I could have and wrote about it. I wrote as though I were certain I sooner or later would talk--as I was--even though I was as certain the certainty was fleeting. I wrote for Writerfellow, who would not easily recreate my mad certainty the love of which I fantasized was possible nor do justice to my joyous and repetitive play if he had no notes from now, the past. Then I made another unusable tape, loved making it.
______


To access LOVE NOTE Chapter 11 part iii click here.
To go to the THE HEALING & LOVE NOTE DISCUSSION FORUM click here. I want to hear almost anything you are willing to say, including whether you have had similar or contradictory experiences. Criticism of my behavior and beliefs is also solicited and will be (more or less!) welcome.