Saturday, February 9, 2019.

Good news: Mike is miserable. To me, this means he feels well enough to be assessing his physical state.

Bad news: Mike is miserable. Oh, God, his situation is challenging. It breaks my heart to see him have to struggle this way - and we have a long haul ahead of us. 

 I'm waiting for my laundry to dry before I go to bed. Tomorrow I move to the ashram.

Mike kept expressing concern about the dialysis. What can I say, he really hates the process. Mike's idea of meditation is to read a book and distract himself. He's gotten away with that so far; his body hasn't demanded his attention.  Now it does.  He says it is so distracting.  Being aware of feeling can be.  I started to tell him to think about something pleasant.  Of course, he couldn't maintain that. I'm an experienced meditator, and I couldn't easily maintain it. I reminded him that the goal is not to entirely block out all unpleasant sensation but to observe it with calmness, equanimity is the term the Buddhists use.  I sat there reminded him to return to his pleasant thought. 

            Then I had to go.  The kind of concentration needed here is what a mother gives a newborn. It intense; it's constant; it's exhausting.  But he needs this attention because he has nothing else.  I feel I am his lifeline to another world in which he used to live. But when I feel myself burning out, I have to leave. 

            He was in the middle of dialysis when I left.  I had made sure he was moved right before I left since he was facing four hours without being able to change position.  I also made sure that his inflatable mattress would be inflated regularly.  Now that was somewhat of a challenge.  The nurse had no problems with it.  The dialysis nurse said I had to ask her.  I went out and confirmed it with her, came back in, and reported her response, and the dialysis nurse repeated I had to ask the nurse.  Oh, boy.  The aide wasn't too happy with this deal, either.  Not because she was going to have to do the inflating.  It means operating a blowing machine, not blowing it up with her own mouth. I think her problem was that the mattress was being used in ways she wasn't used to.

            The mattress inflates from the foot of the bed on up, so it acts as a massage as well as shifting his whole body slightly. I asked how often he wanted the mattress blown up; every 15 minutes, every half an hour or every hour.  He selected every half an hour. 

            I also talked to Mike about Elsa, our Havanese. I showed him pictures of her curled up with him while he slept. Then I asked him if he wanted me to buy him an Elsa. He said yes, so I went off to locate a good-sized stuffed animal.  Target was my destination.  Lady Gaga, as Mike calls the GPS system, led me on a wild goose chase. A 2 miles drive turned into a ten-mile drive.  I wasn't sure when she was warning me of an upcoming turn and when she was telling me to turn -NOW! So, there were a few turns I made when I shouldn't have and a few I missed. 

            I finally made it to Target.  I found a moderately sized stuff white bear.  I called Mike to make sure he understood I wasn't going to be buying another dog dog but a stuffed animal.  He did get that and said the bear was fine.  I saw Valentine's Day cards and picked one up. 

            When I got back to the room, he was complaining he was freezing cold.  That can happen with dialysis.  The machine warms the returning blood, but it passes through a loop of tubing that is not warmed. Therefore, the blood comes back into the body, slightly chilled. 

            The aide said she had gotten him extra blankets. I told her to get hot packs.  She said they're small.  She brought two back.  I laid them on the hara line across the stomach; something I learned from the Tiloves . That helped a little.  Then I reached under the blanket and rubbed his leg. This is learned from my mom.  She showed me that when you're cold if you rub your skin, it warms up your whole body.  Best is the back, but the upper arms, and in this case, the upper legs works too.  Then I thought of rubbing his feet only to discover that the aide had never thought to cover his feet.  Yikes! I asked her where I could get warm blankets.  On the first floor, they are in a cabinet in the middle of the floor. Anyone can get to it.  She said she would get it.  I waited, and waited, and waited.  Then I went out in the hall, saw the nurse and asked her if she could get it.  I also told her that the aide was out getting it.  The nurse made it to the closet before the aide.  This aide is only in this one room; she has two people to watch. What took her so long!  The doctor handed her the warm blankets, I took them from her and went in the room to put them both on his feet.  He said that was much better.  Someone, please explain to me how someone who is a hospital aide does not know that the feet are part of the body, and they must be covered.  This man had to suffer needlessly.  I don't think I said anything specifically nasty, but she didn't leave any doubt about what she thought about me. I hope I was more subtle about my thoughts about her.

            It was then that Mike started talking about how miserable he was.  I told him this is the situation he is stuck with; he is in an Existential prison, as a philosopher, he understands that term.  He is going to have to find a way to cope.  The only solution in a situation like this is to find a way to make it interesting.  I showed him how to use the meditation technique I had learned. I asked him if he was colder in one place than another.  His first reaction was that he was cold all over.  Then I point to an area that was an inch square and then another inch square section and asked him which was colder.  He was surprised that there was a difference, and he had an answer.  I left him practicing this meditation discipline. Mike has been able to ignore his body all his life.  He has lived in his mind.  Now he is being forced to pay acute attention to his body.  It hurts, and it's not providing him with the service it always has, which has been as an instrument of food intake, sex, affection, and locomotion.  Sometime in the past, he asked how he wound up marrying someone with the acute sense of body that I have.

            The Buddhist meditation I practice says that we have to develop two complementary skills: awareness and equanimity.   If one is more developed than the other, it creates an imbalance.  Some people develop awareness at the price of equanimity and others at the price of awareness.  I had developed awareness to an extreme degree without equanimity.  (It drove me nuts.) Mike develop equanimity at the price of awareness. There are those who all but leave their bodies to avoid awareness.  It is my observation that those who pursue equanimity at the price of awareness often function better in the world, but it requires denial of feeling. Feeling is always physical.  However, I have seen exceptions to that too.  I recently worked with a 3rd grader whose whole life was Fortnite. That's all he wanted to do.  I discovered that he had escaped entirely from his own body. The only time he felt alive was when he was playing that damn game.  Can you imagine? We're talking about a 9-year-old.

            I told him to feel the back of his legs against the chair. Then to feel his arms against the side of his body.  That simple exercise changed everything for him. I don't know to what degree, but I can tell you that the teacher noticed a change in his attitude and behavior. Point being, that equanimity can be taken to such extremes that it becomes totaling dysfunctional, too.

            For those of you who have known me forever and a day, you know that I erred on the side of awareness.  Fortunately, Vipassana, the type of Buddhist meditation I learned, guided me to safety and vastly improved functionality. Mike is going to have to learn a whole new order of spirituality. I've encouraged him to rest in Christ. While he believes it is possible, he doesn't' really know how to do it.  He will have lots of time to learn now. The only way I know how to make an unchangeable situation tenable is to find it interesting and learn from it. 

            Whatever else happens, Mike is going to come out of this a more amazing person than he was before – and he was pretty amazing already, in my book.  I assure him every day that I love him, adore him, and I'm booked for this journey with him. (Frankly, I'd rather do this kind of journey any day than go sightseeing. Go figure!)

Saturday, February 9, 2019, 2 pm

Good news: He's sleeping peacefully.

Bad news: I have to try to keep him awake.  The doctor says patients get confused if they sleep during the day and are up all night. It's not good for them to break their routine.  Someone said they do it just so the nurses have a smooth night shift.  But apparently, there is more to it than that.  He has been really out of it today. He was good last night but overcome with sleep when I arrived and remained so ever since.  Fr. Paul visited him.  He was able to communicate that he was aware of his presence, but didn't open his eyes the whole time he was here. I was a little worried, but all his vital signs look good. Guess laughter isn't on the schedule for the day.

Neutral: For those who are unsure: Mike has been on dialysis ever since he arrived here. We were sent over to Oahu because he needed dialysis, and the Kona Hospital couldn't provide it.  If he hadn't been getting regular dialysis, he would have been dead a long time ago.  He has been following his regular schedule.  At first, he was able to go to the dialysis room, but since he has been in the ICU, they have brought the until to him.  He hates it, even without any travel time added on.  

            

            His dialysis is scheduled for 1 pm today. He's been calling out, "When will the dialysis start?" "Has it started yet?" I asked him if the dialysis itself is uncomfortable. He said, "No, it's the protocol." I asked him if he meant the process of hooking up to the machine.  He nodded, yes. I reminded him that they weren't using the fistula anymore. They had put in a port. Was he worried about the fistula?  Yes, he said. It took him a few tries to get it through his thick head that the fistula was no longer in use.

            For those of you who know nothing about this process:  Mike had a fistula put into his left arm for dialysis sometime in August. It's a minor surgical procedure where a vein and an artery are somehow joined together. One needle goes in one part, drawing the blood out, the other needle goes into the other part, returning the blood after the dialysis machine has processed it – I think.  Close enough!  There are two ways of getting in: one is by the fistula with needle; the other is by a port, which provides constant access to the body.

            Mike's fistula never worked correctly.  It took up to an hour to get in.  They would poke him repeatedly to try to get it in, so the blood flowed adequately. One time it took up to two hours to get in.  It was horrible.  Finally, someone did say to him he should get it checked.  Before then, he was simply told he had to tough it out until it matured. As it wound up, he has small veins, and it is just tough to get in.  Mike hasn't been stuck by a needle for about a month, and his arm is still black and blue. Thank God he got the port before pancreatitis hit.  He wouldn't have been able to get this port installed in the condition he is in.  I don't think he could have survived the additional pain of those needles along with what he is currently going through.

            

Good news: My sense of urgency is less, and I am slightly bored.  Wonderful!  I can do something other than focus on his minute by minute needs.

I promised to tell you what happened after Damon and Jean arrived the night. Mike was admitted to the ICU.

            As I said previously, I believe, Kathy and John Coughlin waited with me until they could hand me over to Damon and his mother, Jean. Then they went home to sleep.

            Damon had made reservations in a hotel, the Ashton Executive Suites, I think.  When we got there, he said it wasn't what he was thinking of.  It was executive suites.  Jean and I had a small apartment together.  Shivani was going to arrive the next day and had also made a reservation in the same place. 

            While we were at the hospital, Damon asked what I needed to feel better.  I said, "Nature!" Me I'm thinking walking out of the hospital and lean on the barrier of an overpass in the hospital driveway to take in nature in the gully beneath.  Damon says, "We're going to a 5-star hotel." Wow! That's one solution to the problem.

            We all moved to the Prince in Waikiki that night. Jean and I shared one room, and Damon and Shivani shared the other.  He said the Prince didn't cost that much more than the other hotel with my Kama’aina and Shivani's AAA. Admittedly, the view was spectacular. I've already mentioned those incredible windows that opened so wide without screens, and Damon and I both wondered if people came there to commit suicide.  The view is of the mariner and the ocean beyond it, and the horizon beyond that. It was a lovely view.  Damon even noticed that there was a park for me to walk in. Very, very sweet.  Very, very caring.  I am very, very touched by his care and attention.

            We had a great time at the hotel. It was indeed much more cheerful than the executive suite we were in.  We ate breakfast and dinner in the hotel restaurants.  We, I, had a fantastic time.  If I posted the pictures from that time, you all would have envied us. Look at those folks; their lives are perfect.  Yep! Just perfect- if you don't count the fact that someone we love is in the ICU fighting for his life.   But it was a wonderful time.  I believe it was more enjoyable for the contrast.   I was surrounded by people who cared about me and cared for me. 

            Damon and Shivani told me they were committed to helping take care of me.  How lucky can you be?  I never gave birth and have three kids, Yvette, my goddaughter, Damon, my step-son, and Shivani, my niece, who are committed to helping to take care of me. Of course, I cheated.  I was and am a good aunt and step-mother, but I don't confuse it with the more complicated, and dangerous, role of being mother, nor the emotional bond which results from that more deeply committed relationship.  I am grateful for what I have, trust me.

            Our first evening together, the four of us ate together.  I laughed and laughed.  Then Jean came down with a slight cold.  She took to her bed and didn't interact with us much anymore.  She was still there. That was enough.

            The second night, it was just the three of us.  I think this is the first time I have been alone with Damon as an adult.  Shivani was with us.  She lived with Mike and me for a while in Princeton, and then I visited her once in SF many years ago.   This was different.  These 'kids' are all in their 40s.  As I remember it, it's at the point where we all start viewing the familial adults in our lives as human beings instead of failed icons.

            On the second or third day in ICU, a care package arrived from Kona.  It was the size of a file box.  The nurse thought it was dialysis supplies.  I opened it, looking forward to seeing the clothes I needed.  Judy and her sister, Paulette, insisted that they put together 'outfits' for me.

Anyone ever seen me in an outfit? I wear clothes with a mind to protect me from the elements and from being kicked out of whatever establishment I was thinking of entering.  Period, end of sentence!   But they put together outfits.  Problem: half the clothes they sent over weren't mine. They were Yvette's.  Now Yvette is 5'10" 130 lbs., and built like a model. She is slender, long-limbed, a spectacularly beautiful woman. I'm 5'3" 135 lbs. with a 'mature woman's' belly. Hmmm!  They had raided a laundry basket in my laundry room. Yvette will use my washing machine when she has too much to do. (She's a massage therapist and washes a vast number of sheets.) And, since their dryer broke, she always uses mine. We're on the same electric and water, so it makes no difference to us, and it saves them the expense of buying a new one.  If ours breaks, we're covered by Sears master plan, which we have used with great pleasure.

            Besides any number of items of clothing that would never fit me in a million years, they included a pair of pink lace thongs. They thought I had a secret life. Not at any point in my life would I have worn something that uncomfortable and itchy.  All cotton bikini underpants, yes. Lace anything, no. No less a synthetic material. Never, never, never.

            Many years ago, Leona Helmsley was sent to jail.  I had a nightmare that she would have to sleep on polyester sheets and wear polyester clothes.  Does that give you an idea of how much I hate synthetic materials?

            Yvette sent me another care package with some shirts, my yoga clothes, and a bathing suit.  Everyone else had been using the hotel pool, but I couldn't. Now I could. When we came home from the hospital, Damon, Shivani, and I hung out, rather than swam, in the rim infinity pool of the hotel.  It was lovely.

            Dinner was sushi that night.  Both the kids love it; some of it was new for me. I've been a California roll girl.

            Jean left on Friday. Damon got her business class so she could sleep comfortably on the plane to the east coast.  Before Shivani and I went to the hospital, we went to our Turo host to pick up the rental car after dropping Damon off at the hospital. Damon left on Saturday when he finally got news of the results of the CAT scan after delaying his scheduled flight.  Shivani and I went to the Airbnb she found after we left the hospital.  Shivani got up at some impossible hour the next morning to make her flight to SF. I was on my own, but the kids had made sure I was settled. I repeat how grateful I am for their attention.  I didn't have the mental stamina to deal with all that on my own.

             Sandor and Meali'inani came to visit.  Whereas Mike wasn't awake when Fr. Paul was here, he was feeling a little better now. They made him laugh.  I sat outside in the sun while they visited it.  I had to choose between the laughter and the sun.  I need sunshine. I finally remembered that I haven't been taking my Vitamin. D pills.  I must buy some.

            While I was out, a doctor came in and told Mike he had an infection. Sandor thought she was simplifying the words for his sake, figuring he didn't know the difference between an infection and an inflammation. We have been assured there is no sign of infection on the CT scan, which shows up as bubbles.  When she left, Sandor assured Mike that he didn't have an infection.   He said they speak to you like you're a child.  He said I know.

            The dialysis still hadn't started.  Every once in a while, Mike wakes up and moans about the dialysis.  When is it going to start? I'm just sitting here doing nothing!  I started teaching him how to redirect his thoughts. "Think of something else. Think of something nice." He does that and then slips back.  Even a trained meditator does that.  So, I'm his reminder.  When he wakes up, I remind him to go back to his pleasant thoughts.  I told him that there is nothing he can do about the dialysis, but he can do something about his thinking about it.

            The dialysis nurse just came a few minutes ago. I spoke to the regular nurse and the aide to make sure Mike gets turned right before his dialysis starts since he has four hours straight to go, even though he was just turned an hour before. The nurse gave me a look but agreed. I'll take it.