Locked in a Box

This week's House was a powerful story of a man struck with the ubiquitous mystery illness which leaves him totally unable to respond to stimulus. People around him have no idea that he is aware of everything that is being done, of everything that is being said. He can even see bits and pieces of things, but can't communicate at all.

It reminded me of the old Dalton Trumbo book, "Johnny Got His Gun," published in 1939 and seen as leftist pacifist propaganda, which was pulled from re-publication by Trumbo and his publisher after the end of World War II (according to Wikipedia).

"Johnny Got His Gun" was the story of Joe Bonham, a young soldier serving in World War I, who wakes in the hospital after an explosion. He gradually realizes that he has lost all of his mobility and his senses except for touch — he has lost his arms, legs, eyes, nose, ears, tongue, both jaws and all of his face — but that his mind functions perfectly, leaving him a prisoner in his own body.

It's been a ong time since I read "Johnny Got His Gun," but what I remember of it was that he tries to communicate, but has no ability to and everybody ignores him except for one nurse who senses that there is someone inside there. He can hear but she doesn't know it. But she talks to him anyway, and he finally finds a way to communicate--I think he bumps his head trying to tap out Morse Code. What he wants is to be on display so that people can see up close and personal the horrors of war, but he is a governmental embarrassment and he is moved into a darkened, locked room, and given only the minimum care, his sympathetic nurse being assigned elsewhere.

It's a very disturbing book. The guy, like the patient in the House episode, can't even kill himself because he is completely trapped inside a non-responsive body.

For someone, like me, with claustrophobia, it's terrifying the think about being inside a body, completely aware of all that is going on around you, everything that is said to you and about you, but unable to communicate at all, unable to make the slightest movement.

I thought about that when we were visiting Walt's mother in the hospital, and listening to what she was saying. She does get somewhat delusional when she's in the hospital. She sometimes sees things that aren't there (or...having watched Touched by an Angel enough, maybe she sees things that ARE there and that we just can't see!). She can't really see much, though she can see some things. She kind of goes in and out of understanding that she is in a hospital, not the Assisted Living facility. In one sentence you first think she understands that it's a hospital, but then she'll ask you to "run upstairs" and get something out of the apartment for her.

I'm trying to imagine what it must be like to be 95, to be scared (I can't imagine she's not scared), not to recognize where you are, to be unable to find a visual focal point to ground you and help you understand that no, Norm is not going to come and visit you today, and that no, you can't just get into the wheelchair and go to the dining hall, because it's far away from where you are.

At one point she was saying that she never imagined that it would take this long to die, but on the other hand if you ask her if she's ready to go, she says that she is not. She talks about how she will never leave the hospital this time, and then in the next breath asks to go home.

It's like being locked in a box and unable to find a way out, unable to understand where you are, unable to really say what you are thinking to the people around you. And yet you have to hand it to this lady. She was widowed at 43, with three children to raise, and she did it very well. She's traveled all over the world (though can't remember most of her travels now, she says). She's seen all three of her children grow up to be adults of whom anyone would be proud. She's seen all of her grandchildren married and she has held a great grandchild. She is endlessly interested in politics and sports and even if she can't see a golf tournament she listens to it.

I'm sorry that she is going through such a rough stretch, but very impressed with how she has lived her life and how she is handling this end of life period. She could die soon, or she might live to celebrate her 100th birthday. She has been such a fighter all of her life that I'm still planning on making her 100th birthday cake!

LESTER. Tot has a new name, Lester, following a Sykes family tradition of giving female dogs male names (actually we've only done it once. After our first dog, Ho Chi Mutt died, leaving behind the puppy Jeff (Mutt and Jeff), we started looking ahead to our next pair of dog names and decided to go with Seymour and Schwenk (the middle names of Gilbert & Sullivan). We decided if you only had one of the pair, Seymour was a better name than Schwenk. But when we went to the animal shelter, we all fell in love with a female puppy. Walt agreed to let us adopt her, but insisted we were going to stay with the original name. So we had a girl named Seymour for 12 years and never did name a dog Schwenk.

Jeri and Phil wanted to name a dog after Red Sox baseball pitcher Jon Lester, who has survived cancer, and whom they find an inspiration. And so their new dog, whom Walt will transport to Boston perhaps next month, is going to be named Lester.

I'm still enamored with this puppy. She is so well behaved and is so good with the other puppies, though she is three times their size. I think she will have a long and happy life in Boston--and will have a great relationship with Jeri and Phil.

Ashley received the report on the autopsy of Diana: "Diana's heart was very very enlarged. She likely had a congenital heart defect from birth. Puppies like this don't die right away, but as they grow and need more oxygen they get worse. All the sudden she stopped being able to use her limbs -- which I interpreted as neurological from the medication, but it was actually because she was not getting enough oxygen so her body redirected her available oxygen to her vital organs. I held her a lot in the end, so hopefully that made her feel better. and her brothers and sister cuddled her a lot too."

FYI: I don't know what is going to happen with entries for the next several days. I am reviewing a show in Sacramento tomorrow night and then driving from Sacramento to San Rafael (probably arriving around 1 or 2 a.m.) so I can take my mother to the hospital first thing in the morning. I will be there at her house most of the week, since she can't drive and has doctor's appointments every other day. The problem is that there is no longer any internet connection at her house, so I will be posting whenever I get out and look for the nearest wi fi hot spot each day.

Download This Video

We talked about my putting the sound of Ned's birthday video for Bri on my digital voice recorder so we could play it for Walt's mother. But then in going through some new stuff that came across Facebook this morning, I was led back to Greasemonkey, that wonderful set of Firefox scripts for doing all sorts of things.

I didn't even begin to get into the Facebook scripts. I was immediately stopped by seeing that there was a script to download YouTube videos.

I'd been using a script for a long time to download YouTube videos now and then, but that script had been disabled by YouTube, the site says. I was thrilled to see that another one existed. I downloaded that and...voila! I had Ned's Brianna video on my iPod Touch. Yippee.

Well, lemme tell ya, I started going crazy, downloading my favorite videos of mine as well as some of the videos I've been posting in "Look at These Videos." I spent the entire morning downloading videos and transferring them to the iTouch, which does such a great job of showing them. This is just great because it will allow me to share some things with my mother. I have no internet connection at her house, so I haven't been able to log into YouTube to show her, so this is a great way to do that.

Walt went off to the hospital this morning while I stayed home downloading videos. The plan was for him to pick me up so that we could go to Tom's at 1 and spend a couple of hours with Bri and her other grandma, like we did two weeks ago. Then back to the hospital to visit with Walt's mother again.

Bri was somewhat subdued. Despite all the activity yesterday, she still didn't have the best night, but she had taken a nap in the morning. The nice thing about having been here several times in the last 3 weeks is that she looks like she recognizes us when we arrive.

We visited with Bri and Grandma Geri for awhile, then went out to the front to see all the new outdoor toys. Grandpa decided to put Bri's new chair set together for her.

It turned out great and proved to be so strong that it even survived his tripping and almost falling on top of it.

Grandma Geri was very conscientious and followed Bri around with an umbrella when she was in the sun, so no sun got on that still fairly bare head.

(The precautions we know to take for kids these days always makes me wonder how in the world our own children made it to adulthood!)

Bri was getting pretty sleepy, but of course would not go to sleep in her bed, so it was time for a walk and hope that she would fall asleep in the stroller. Since we were headed to the hospital, this seemed a good time to say our goodbyes. Walt will remain here this week, since his mother's situation is still uncertain, so he will probably see Bri again before he leaves for home. I, on the other hand, will be leaving early tomorrow morning for the drive home.

Alice is in that world where she's partly in the here and now and partly somewhere else. She was upset that it took us so long to get to visit her (though Walt had left there at 1 and told her he'd be back at 4...and we got back at 3!) She is very confused about where she is and keeps asking to go back to her room. At one point she was a little testy with me when I wouldn't go into the next room and get her robe. When I reminded her she was in the hospital and that her robe was at home, she asked that we get a wheelchair and take her to her apartment.

At the same time she says that she won't leave the hospital this time and that she isn't doing well. And then she asks if Walt has made a reservation for them in the dining room. Jeri talked with her while we were there and she told Jeri that Norm was coming to see her in the morning, though Norm is not planning to come this time.

Yet, I brought the video Ned had made for Bri's birthday. She can't see it, of course, but she laughed all the way through it and asked if I had any more of Ned's jingles to show her. I was sorry the other ones I'd downloaded really rely on more on the visual and less on the vocal.

I finally left the hospital around 5 p.m., after about 2 hours. Walt stayed behind to wait for Alice Nan and will probably be back at the house around 8 p.m.

So my trip to Santa Barbara comes to a close. Since Walt is staying and thus won't need to make a trip to the hospital first, I will probably get out of town before 10 and should be home fairly early.

Tot has moved in. It will be interesting to see how it is to live with SEVEN dogs! (Shhh...don't tell the neighbors!)

Harry and Grandma

Before you do anything else, you must check out the video of the Dog in the Blue Sweater. It's hilarious.

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It feels like this is all I've done today. I don't know why Walt ever asks me which puppy is in my lap because it's always Harry. Harry will leave a perfectly comfortable warm pile of puppies and come looking for me. I'll be in here in my office and suddenly there is this soft little whine from this tiny little puppy sitting at my feet just looking at me with his head cocked.

"Whine" he will say

I'll try to ignore him, but it will go on longer. I finally pick him up and try to type while holding him, but he's uncomfortable.

"Whine, whine" he will say again.

And naturally, I'm a wimp, so I get up from my desk, go to the family room, get into my chair and let Harry culr up like this on my chest until he falls asleep, which may take a long time (especially if I get engrossed in something on TV!). Eventually I'll move him back to the comfy warm pile of puppies and he'll sleep a bit longer.

He's become this growth, always attached to part of my body.

When I'm sitting in the recliner, with the leg rest elevated, this little head will pop over the top.

"Whine" he will say.

We have now worked it out so that I can lower the footrest a bit, he tries to climb it and I catch him with my feet and then he crawls up into my lap. Tonight I likened it to a newborn kangaroo who has to climb up the distance from the mother's vagina to her pouch before s/he can settle down and rest until it's time to be "re-born" and allowed out of the pouch.

And then there is Diana, whom I started feeding separately from the rest of them because it just seemed that she wasn't doing as well and I thought she wasn't eating enough. So she gets her own bowl in the kitchen, with different (smaller) kibble mixed with human baby food (beef, chicken or lamb) mixed in with it. She seems to have caught up with the others, but when she's hungry, I find her standing in the kitchen, where her food bowl is at supper time, just waiting for me.

The other two are just ... cute. They are affectionate, but not demanding, and they pretty much amuse themselves. The nicest thing is that they are getting fur, finally. It's just little fuzz on their backs, but it has color and you can stroke them and they don't feel like rubbing a raw chicken any more, if you stroke the right part of their body.

No matter how comfortable their bed is, they always
prefer to make a bed on my chair.

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Walt had a call from his sister today and sadly, their mother is back in the hospital, unable to breathe again. She had a difficult time breathing when we were down there for Brianna's birthday but had stabilized when we left and we knew it was from the exertion of getting in and out of her wheelchair. It's so difficult to watch her struggle for each breath. I can't even imagine what it must be to be her struggling for each breath.

So our plans are scrambled up again. Walt is probably going to go to Santa Barbara before I do, so he can be with his mother (and possibly drive down with his brother). I'll still go down there on Friday after taking my mother for her pre-op appointments for her surgery next week.

It's starting to look like we may have bookend mothers at hospitals at opposite ends of the state.

Has anybody invented that Star Trek transporter yet?

Such a wonderful full life

I woke up this morning and realized that the shower cake, for last weekend, had been decorated and eaten.

The wedding cake had been decorated and displayed. It didn't collapse before the wedding, and almost all of it got eaten.

I had decorated my very last wedding cake and the kitchen was all cleaned up.

So what did I do this morning? I decorated another cake! This one was for the celebration of Walt's mother's 95th birthday. It was a rare occasion to celebrate with both branches of the Sykes family, the east coast (Ernie & Lucille, Stacie and son Hazen, Jeri and Phil [who is looking like the cat who caught the canary today!]), and the west coast--the southern contingent (Gerald and Melissa, Tom and Laurel, Alice Nan and Joe), and the northern contingent (Walt and I, Norm and Olivia) plus Jeri's godmother Jeri and her two sons and Phil's mother, sister, nephews, and uncle. I had thought I would make a small layer cake, but ultimately made a huge sheet cake and there is almost none left over.

We wondered how Grandma was going to be today, after her big day at the beach yesterday, at the wedding, but she was in great spirits! I haven't seen her so animated in a long time.

We had reserved the clubhouse at Maravilla, where she lives, and the room was decorated with the displays of pictures of her life, which Norm and Olivia had made up when we celebrated her 90th. Included are some cut out posterboard figures of her at various ages and we compared "Baby Alice" with "Baby Bri."

Bri was actually in good spirits for most of the evening.

with Aunt Lucille

Ernie and Lucille had brought her some gifts, one of which was a book, which Bri devoured hungrily.

She's either going to be a voracious reader, or a goat.

Young Hazen and his Mom arrived a bit late, and brought Grandma a birthday crown and a bouquet of Tootsie Pops.

Her kids (and ours) sang the song they made up for her 90th birthday, updated to today. It goes on for many verses, but the chorus goes

Grandma, Grandma Sykes
Tomorrow she'll turn 95
Have you ever seen the like
Of such a wonderful full life.

She smiled throughout and clapped at the end. It was really very special. (Yes, I have video.)

It was just a lovely chance to spend some family time, all together. When it was time to take her back to her apartment, she waved like a Grand Diva waving to her adoring fans as she was slowly wheeled, backwards, toward the door.

It was time to leave, we knew, because Bri had hit the wall. Even Phil couldn't charm her when she got tired.

It was very special for us all to be here to celebrate another milestone birthday. We all promised to be here in 5 years for her 100th.