Mourning and Blogging

It’s something what the mind races to when it cannot think.

When I was in the hospital, waiting in a dark room to talk to dad again, I thought of the blog. If the terrible thing happened, should the blog’s design change?

The design changed for my grandfather’s passing. Before that day this blog’s banner was a color photo of Lake Henry (outside of Scotland, South Dakota). The lake means a lot to me and meant a lot to my grandfather. What is under that lake does, too.

After that death the color photo became black and white. It looked as cold as I felt.

Then I decided no.

The tdaxp masthead is of the moat around the forbidden city in Beijing, China. My dad was very excited at all the photos I sent back. He was excited about China, too: trying Harben and Tsingtao beer and trying to learn some basic Chinese (my last memory of the shopping with my dad in western Sioux Falls is trying to find some Chinese-language introduction material for him).

In particular, dad would shanghai anyone he could — especially guys near his age — to look at the following photo on his imac. He would begin by saying how I had visited Peking and mention how the city is known for its millions of bicycles. He would show the following image, as the imac’s resolution only allowed part of the photo to be displayed at a time.

Dad would then scroll right. I’ll let you view the full image to get the effect.

Memories of Dad

I vividly remember this story, being immediately told about it by both parties soon afterward.

It’s hard to think of anything that captures dad’s personality better.

It is difficult to put into words the range of emotions I’ve experienced through this. Initially concern, then hope, then consternation, then despair. Eventually fury.

I feel great pain now, as an acquaintance of a great man lost and vicariously as a friend to his children.

Ideas of faith and justice and fairness fall apart at times like this. For some, there is solace in family or faith. For others, solace in solitude and reflection. For others, it is best to revisit the fond memories.

Your father was a kind, gentle man with a sharp mind, wit and zeal for life that refreshed those he met. I have told dozens of people who will never meet him the story of living on the beach and fighting wild dogs for his food and dealing with machete-wielding bus occupants.

Once, I called John to speak with him about some trivial matter at the apartment. Initially, however, I told him I was calling for legal help. I told him I’d run a bus full of nuns and children off the road. He said, “Aron, for a big enough retainer, I’ll make you a hero.”

He’ll be missed greatly, but you know that very well.

Thank you, Aaron, for the story. And my, and my family’s, appreciation to everyone who sent their thoughts, their prayers, their hopes, and their kind words.

There and back again, to a birthday

Somewhat tired after eight hours of driving, but transporting Lady of tdaxp to Nebraska and back is infinitely, infinitely, infinitely better than the alternative after her car accident.

The body shop says that the car appears to be totaled and undriveable. She escaped without a scratch, without a bruise, without a sore.

My dad’s brother’s birthday is today. He was over, and brought another picture-book with him. It included shots I had never seen before, including my dad when he took karate class as a boy. We will use the pictures at the viewing this Thursday.

An open letter to my father

Dad,

When grandpa died, the funeral was happy. His last weeks were painful, but the sense of a happy-long life were everywhere. The funeral was more beautiful than you could dream: a wonderful summer day, cousins from everywhere, a minister who worked for him as a kid, and laughter.

Those aren’t here for you.

You were so happy with life. You were so healthy. You died too soon. The weather is miserable, cold, and lonely. Two of your brothers live in town, but the Upper Peninsula was always your true home.

I feel like a rope is around my neck. I just feel awful.

We were going through old pictures, and I couldn’t. Normally I much stronger with photographs than mom. But I couldn’t finish the task.

I haven’t been able to think. I can’t lose myself in my work, because I can’t concentrate enough to work.

But last night I was bursting with happiness. My girlfriend’s car was totaled. She was hit, from behind, by the rear wheels of a passing semi. A witness told her “you should be dead.” She escaped without one cut, one bruise, or one sore.

While driving to pick her up, “Picture of You” came on my ipod. The singer lost his father young, so I kept thinking of those pictures. Except for one verse which wasn’t about you. Which I thank God never described you at all.

From the moment I heard she was OK to the moment I began writing this, I was only happy. I am crying now, but that is alright. I’m so happy and so sad at the same time.

But as you told my brother, there’s no time for that talk now. This is what keeps running through my mine:

“I found a picture of you and me together”

“I was your child and you were still my father”

“I found a picture of you and you were younger”

“holding me up you were so much stronger”

“i found a picture of you”

“oh, and they were good times, weren’t they dad”

“when you were free and you were young”


Description

“they were good times, until the corporate world
stole a father from his son”

Those are the lines that don’t describe you. You were professional, but you were not corporate. You were great at what you did, but you choose to be with us. The day before your heart attack, you and I were planning spring break on the phone, you and my brother were planning to travel the Oregon Trail, again, on the phone, and you and my sister were planning a summer vacation.

You loved us. We love you.

“i found a picture of you and you were smiling”


“after fifty long years you found the best of life was now”

“and you would never trade it in for anything”

“oh, and they were good times, weren’t they father”

“cause you were safe and you could rest”

“they were good times”

I miss you. I love you.

(Do you remember our secret? I told you when you were sleeping.)

Your son (always),

Dan

A long morning

At about 4:30 AM we received a call from the hospital that dad’s heartbeat had become erratic.

My mom went in immediately. I waited until 6, woke my sister, and brought us both in.

Around seven o’clock, a priest arrived from the Cathedral. He gave dad the Anointing of the Sick.

At 8:30 I went back to the house and returned with my girlfriend.

Noon saw a hospice nurse talk to. Unlike the neurologists and the intensive care nurses, who were consistently helpful, informative, caring, and nice, the hospice worker revealed neither competence, nor intelligence, nor honesty. Care which she described as “identical” turned out to be not at all identical (apparently in her mind, having a nurse check in every ten minutes and having a nurse check in every twenty-four hours comprise identical care). Likewise, her view on treatment of pain is too infuriating to write at this time.

Our meeting was interrupted, however, as dad’s heart rate became less stable. As we stood and sat around him, we told stories and spoke our love for him. While dad’s body failed, the “recovery” I have written about (I, II, III, IV, V) continued, and dad entered a persistent vegetative state. The space between breathes grew from twenty seconds, to thirty, to forty. (I counted.)

The clock reached one. It was two weeks to the minute since we spoke on the cell phone.

Then there was the last breath.

A different kind of care

The good news is that the behaviors we have been seeing over the past few days continued to grow. My dad abducts his shoulders more often and becomes agitated when we leave the room. His arms are as strong as they were before, and explore his tracheal tube. By all accounts, the recovery that was interrupted by morphine (because of his tracheotomy) has recovered the trajectory it was on.

The bad news is that we have not seen the sort of qualitative improvement we have been looking for. Though dad’s movements show increasing muscle strength, they do not show willful muscle control. That is, his hands explore the tube but don’t try to pull on the tube — his hands push down but do not try to get out of the cloth restraints. He recognizes our voices but, aside from moving his head closer, does nothing. The recovery has not shifted into something where dad explores or communicates through his environment.

The other news is that, after another EEG, another CAT scan, and physical tests, two neurologists see evidence of severe brain injury. When dad’s eyelids are lifted he does not track objects. He folds his hands in a way typical of those who experience serious head trauma. His brainwaves are erratic, and the chances of an acceptable recovery are “extremely low.”

The final news is that, with “aggressive treatment,” we could raise him to what the chief neurologist described as the “Terri Schiavo” level of functioning. (Both dad and Terri suffered from “anoxic-ischemic encephalopathy” following a heart attack.) Terri died in a persistent vegetative state, and there was evidence (the shoulders abducting, the sleep cycle, etc.) that dad is entering one, or is in the early stages of one. More terrifying, especially given dad’s thoughts on the matter (separately expressed to my mother, my brother, and myself), the chances of an unacceptable recovery (the “best” that could be hoped for, where he would be confined to a nursing home) may be as high as 5%.

With this news, our care of dad is now centered on making sure he is not, and will not, be in pain.

The various monitors that tracked his heart rate, blood pressure, and saturated peripheral oxygen have been removed. Other things have been removed as well. He is on morphine.

The woman in the dream

Last night I was falling asleep. I was in that period between wake and sleep where time goes fast — you may look at the clock and it is eleven, and the next moment it is fifteen minutes later.

A woman with big eyes and a big, smiling, but closed mouth was looking at me. Close, just inches away from my face. Her face was round and full without being fat, her eyes were black.

I was looking at her with my mostly closed eyes, seeing her without any features being distinct. Time passed and I was still there, and she didn’t move.

I felt the realization later, but the woman does not look like anyone I know. She looked vaguely oriental — but her skin was fairer than a south-east Asian’s, and her features less distinct than a Chinese. Her lips were naturally red, but not overly so, and her eyes were black without being deep. Nor, and again I realized this later, was there a reason for her just to be there. Or just to smile.

She was not heavy. I felt no weight from her. I got the impression she was sitting somewhere on the bed, probably to the left of my knees.

Time passed. And that is what wass strange: nothing changed. She remained there, smiling her closed-mouth, big-eyed smile.

I got up to try identify her and I felt and saw my eyelids open while I was still seeing her. Then in that instant I didn’t.

My first thought, or maybe my second, was that she looked a lot scarier than I thought just a second ago. But none of her features were scary: no sharp eyes, no teeth, no grimace, no coldness. Only the smile, still but not frozen.

The room was darker than it had been a second before, too. Seeing her, I had the impression that a weak but warm light bulb was on somewhere on the other side. Then awake, the room was of course black: lit only by the odd electronic light, and the street lamp outside.

But seeing her at the time, I did not feel peaceful, or scared, or relieved, or frightful. Only, and I guess this is why I woke up, just every so more tired at the effort of not closing my eyelids in social obligation not to fall asleep while someone was looking.

I think the same thing may have happened later that night, but that may only have been a memory of the dream.

My Brother and My Father

My dad is on some pain killers following his operation, so during the 11 o’clock hour — when he is normally the most active — his pulse did not exceed 91 beets/second. So other than a confirmation that he would soon be moved from critical to pulmonary (merely because the successful tracheotomy means he doesn’t need round-the-clock attention, but does need special attention to his breathing tube) I don’t know much.

My brother, Catholicgauze, has also been following the events. WhileI have let tdaxp become far more of a personal blog than Geographic Travels with Catholicgauze over the past many days, my brother’s words are more concise and less technical.

He has written four dad-related posts:

My dad’s heart attack was the Saturday for last. With this post my first writing on his illness, titled “Sick,” falls off this blog’s front page.

Dreams and what is real

I woke up this world to blackness. Actually, dark greyness. The entire world was two geometric planes, with the minor (lightly darkish grey) plain intersecting the major (very dark) plain at almost a right angle. I was falling, so I reached out to the lighter plane. But as I reached it fell away, and….

*crash*

… I woke up on the floor and saw I had pushed my nightstand/table/minishelf onto its side as I fell off the bed. The crash as a broken glass of water I had poured the night before. My reading light was somehow undamaged.

But this real thing, I can’t wake up from this.

A very close friend of mine at the university checked up on me today, asking me how I was and (quite seriously) what he should do with my food (I have grape juice which will last for a thousand years, but carrots which were probably bad last week). To the first question, I don’t know, and the second question, whatever he wants.

(I am now looking over what I just wrote and note that the first sentence should probably be “I woke up to blackness.” But “this world” is there, and the only other formulation that rings a bell is “I woke to this world in blackness,” which doesn’t quite make sense. Or, “I woke up in this world to blackness.” Whatever. I’ll leave it as it is.)

The neurologist spoke to my mother after I had left and emphasized that she wanted to see more. I think I know what she means by this: either response to commands or more opening of the eyes. I think hearing this conversation is what got me down. Immediately before that call I was pretty happy.

Everyday I have been looking for one new thing. Direction, not speed, as Tom says, and as most of the people we see say.

Today I saw or heard about the following new behaviors:

  • Opening eyes in response to mild physical stimulation. Before today every time my dad opened his eyes was either because of applied pain or when we were talking to him. Today he opened his eyes while he was being shaved.
  • Grip of the hand. While not a “clasp,” dad can apply pressure to his fingers to close them more firmly.
  • Significant motor response to conversation. At about 11:00 I told my dad I had to go, and this agitated him. His heart rate went up and he began moving around a bit more. So I stayed with him and my mother and talked. What I remember next is clear but out of order: he moves his head directly toward my voice, his brow grimaces in concentration, his lips move slightly without tongue movement (it looked like weekly attempting to speak without sound, but I will report the behavior, not the cognitive speculation).

Additionally, two behaviors which make me happy continued.

  • Dad appears to be in a steady sleep cycle, with activity during the early morning hours and before noon, with sleep in the evening and mid-morning. The burst of activity after 11:00 AM I mentioned above is the latest example of this.
  • Dad also can “arm wrestle” — apply counter-pressure in response to arm-to-arm pressure in the manner of the children’s game. I haven’t lost yet, but I had to concentrate to win today more than before.

So what’s where I am. Greedy and impatient for progress. It’s appropriate that one good site for coma-victim families is waiting.com.

I am back in Nebraska now. I have to teach Wednesday and Friday, and give a test on Thursday, and I take that responsibility seriously. My dad would to: he was a business law college instructor for years on the side, and always wanted to retire to that. (I’m talking in the past tense because his law practice became too successful, so he cut out the teaching so he would still have the same time for his family.)

I miss my dad. I want him back.

Thank you for your kindness.

It smells like spring outside.