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A Grief Observed (Preemptively)

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

If you would like to read our story from the beginning, you can start here: How We Got Here…

This week we welcomed a new member to the Porter household. Her name is Lawtay and she is a 6 month old boxer mix. She is very gentle, loves to cuddle, and is already helping to support me and Frannie too. The only problem is that she may end up being a bigger dog than we originally expected. Right now she weighs 40lbs and according to the vet is a little underweight. By the time she’s full grown, she could be a 50 to 60 lb dog…

Janet is spending more time alone (her choice) but occasionally gets very persistent about calling Frannie for things that she either has no control over, or are things that are already done. Finally, I had to tell Frannie to not answer the phone when her mom is in that sort of mood. At the same time, Janet fell again this week and sat on the floor for a couple hours before getting herself up. She didn’t have her phone with her and she fell because she refuses to use her walker, which she needs. I have talked to her about getting a LifeAlert-type device.

If you are of a certain age and live in the US, you likely remember the TV commercials where an elderly actress intones the now famous line: “Help, I’ve fallen and I can’t get up!” Random thought: I wonder if the company exported the commercial anywhere else?

However, Janet has resisted that assistance too. She says that she doesn’t want something hanging around her neck. Maybe if we could find something that she wore like a watch, or pinned to her. In any case, it may be time to stop asking her, and to start telling her that we are getting something.

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When I first started writing this blog, I frankly didn’t think Janet would live very much longer. This was perhaps understandable because last November she was talking constantly about wanting to die. In fact, one of the first things I wrote was a death announcement with blanks for time and date of death. As it turns out, it was just perseveration – this time on death. One benefit that the exercise of writing Janet’s death announcement brought out was that it got me wondering what it would actually be like for Janet to be really and truly dead.

This week I have been rereading C.S. Lewis’ A Grief Observed. I first read it many years ago and it was, at the time, a rather academic exercise of the nature of, “Oh isn’t that terrible what he went through.” Needless to say, my experience of the book is markedly different now. Now, there is nothing academic about it. Now, I have some “…skin in the game…” In fact, when I was starting this blog, many of the names I considered were variations on the title of that book.

For those who are not familiar with the book, Lewis wrote it in response to the death of his wife Joy Davidman, from cancer. However, it didn’t start out as a work to be published, rather its genesis was a collection of notebooks that he kept around the house and wrote in during the time in which he was recovering from his wife’s death. Because these notebooks were essentially just between him and God, he exhibited in them an extraordinary degree of intellectual and spiritual honesty. Moreover, many of the notes read as though he felt that Joy was, in some way, watching over his shoulder to make sure he was being honest. In the end, he didn’t hold back on any thought, any feeling, any idea, or any doubt – and he did have doubts.

It was only later that it occurred to him to take the contents of these notebooks and get them published, and when he did so, it was initially under the pseudonym N.W. Clerk.

That story also explains one of the most striking features of the book: When he went to turn it into a book, he didn’t try to take the raw material and forge it into a continuous narrative with a beginning, a series of obstacles that he had to overcome, and then finally the requisite happy ending. Rather, the book consists of short paragraphs, and even single sentences, that document isolated moments in his life and the thoughts that went with them.

As I began writing this blog, I had two prayers: 1) that I could become even a fraction of the author that Lewis was and 2) that I could be as honest as he was. As it turned out, writing is, at its core, simply a skill like brain surgery or pipe fitting. Consequently, it is something that can be learned. (Having a good copy editor who studied English at Purdue helps a lot!) The second goal, however, is a far harder nut to crack, at least in part because, unlike acquiring a skill, it is an ongoing battle. Intellectual and spiritual honesty is always a struggle because (for me at least) there is always that voice in the back of my head telling me, “Oh no, you can’t say THAT. People will be disappointed. People won’t like you anymore.”

But even if you aren’t writing for the eyes of others, this type of honesty is critical because it helps keep us grounded. There is a popular meme on line that says:

The most common lie
that humans tell is:
“I’m okay…”

Unfortunately, we don’t just tell this lie to others, we lie to ourselves too. We tell ourselves that we are “okay,” when the truth is that we are far from “okay.” For example, one of the many things that Lewis observed and documented is the trouble he had pulling together the motivation to even shave in the morning. What difference did it make, he mused, whether his cheeks were smooth or scruffy?

But he openly discussed weightier matters as well, and he examined each one with an unflinchingly honest eye. He talks about his doubts about who God is, and His motivations, doubts about his own faith, doubts about the nature of grieving, doubts about Heaven and the afterlife, and even doubts about his love for his late wife.

We often think that when sharing with others that we should avoid the “soft spots” in our faith and concentrate on the places where our faith is the most sure and solid. But is that approach always the best policy? For me, the answer to that important question depends on the point of your sharing. If the point of the conversation is to highlight what a wonderful person you are, then yeah, that sort of sharing will probably serve you well.

If, however, the point is to help the person you are talking to, then it might not be the optimum approach. I have mentioned before that by training and by vocation, I am an engineer. One of the mistakes that I often see young engineers make is to think that our customers want us to be able to recite preformulated answers to their problems. Now, while these sorts of inquiries do typically lead to the formulation of a solution, what makes a customer feel comfortable with us professionally is (paradoxically) not the answers that we present, but the questions that we ask.

I would assert that the same principle is in play for matters of faith and life. When someone asks you how you are doing, perhaps they are just passing time with small talk. But perhaps too, they are wanting, or even needing, to open a dialog with someone who understands their weaknesses – not a Superman or Wonder Woman who has everything all sorted out. Perhaps when you are talking to someone, the thing that they need to hear above all else is that they can survive the worry and the doubt. I can’t tell you how many times I have felt so low that I prayed to last just one day longer than Janet so I can see this thing through to the end.

But I can also tell you that those feelings pass. I can tell you that there is light at the end of the tunnel. I can tell you that in spite of doubt and fear, there is always hope to not only survive, but to thrive.

In Christ, Amen ☩

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A prayer for when you are weak with doubt…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for Your strength and the strength You give me. But today I want to bless You especially for my weaknesses, but not because your strength is visible in my weakness, but thank you for the weakness. Thank you for giving me the wounds and scars that allows me to relate to those in need, and offer them hope for the future. Amen”

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Memorial Day 2020

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

If you would like to read our story from the beginning, you can start here: How We Got Here…

The other day my sister Margie sent me a link to a video that relates to Memorial Day. The pictures are of the sort that you would expect on a video commemorating this day. The words were drawn from President Reagan’s first inaugural address.

As it happens, I never had the chance to hear those great words as they were being spoken. At the time, I was in the Air Force, and as a very small part of the Nuclear Triad, I was standing alert that day. Within moments after President Reagan finished taking the oath of office, we had a klaxon, so as my new Commander-in-Chief was speaking, I was sprinting across the tarmac to get our EC135C Command Post in the air…

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That day seems so long ago, but it is easy to remember the optimism that was in the air. After 4 disastrous years of Jimmy Carter that saw an oil embargo, double-digit interest rates, out of control inflation, 444 days of Iran holding 52 American diplomats hostage, and a botched rescue attempt that resulted in the deaths of 8 servicemen, the nation needed hope, and President Reagan delivered, in aces!

But that bit of historical context isn’t what this post is about. Context helps set the stage, but is not, really the point. The point is, “Why?” Why Memorial Day? Why did young men and women in the prime of their lives give it all up for … well for what?

I think that part of the problem with where we are today (not just in the US, but worldwide) is that we live in a culture where it is necessary to even ask the question. When I was young, the question was not necessary because everyone understood what was necessary for a free people to remain free.

Moreover, we understood that nothing was more important than freedom: Not politics, not power, not money, not property, not family, not health, not even life itself. For those of you younger than 40, it may be hard to imagine, but I assure you it is true. People did believe those things. Moreover, Arlington is real – as are the sprawling World War II cemeteries in France, Luxembourg and other places. Like some sort of macabre Disneyland attraction, the markers are not made of plastic and put out on the weekends so the tourists can take selfies.

[Which brings up an interesting question: does Germany have any World War II cemeteries to remember the lives of the good men and women who died thinking they were protecting their homeland? As President Reagan would point out in later years, in their own way they too were victims of the National Socialist German Workers’ Party (Nazi).]

We live in a culture – again worldwide, not just the US – where love of one’s own country has somehow become racist. We live in a culture where self-sacrifice is seen as “stupid” or “a waste”. We live in a culture where asking for sacrifice in the name of freedom is seen as despicable, selfish, or even psychopathic. We live in a culture where “every life is important,” but murder is openly condoned and even promoted in the form of assisted suicide and abortion. And then there is the panic around this virus which – when properly managed – has a survival rate greater than 99%. Unfortunately, anything less than 100% has become unacceptable, for this disease at least.

The truth is that we live in a culture where Memorial Day (or the comparable holiday in your country) seems rather pointless. These holidays celebrate an ethos or worldview that is (at best) passé or quaint. While we rightly call doctors and nurses dealing with the pandemic “heroes” I have also heard that label applied to pizza delivery drivers. About the only thing to be said for today’s culture is that (for the “spiritual”) it is a lot more convenient. In years past, to see God you had to become a hermit, or spend years in meditation and contemplation. Now all many people have to do is look in a mirror.

However, all is not darkness. Years ago I went on a NATO exercise to Luxembourg. We were a small Air Force contingent with a Luxembourg officer serving as our liaison and interpreter. One day an old man came peddling his bicycle up the road. As he got near you could see that in the basket of his bicycle he had a bottle of wine and several glasses. The interpreter went and talked to him and when he came back he explained that the man had been a young boy when Luxembourg was liberated by Patton’s forces in WWII (which, by the way, included my Dad). So, every year on Liberation Day, he would go to the Allied cemetery there and put flowers on the graves of the men who died during the liberation. When he had heard that the “Americans were back” he had bought a bottle of wine, and he rode his bicycle to find us and thank us. As we drank the wine he poured for us, I told the man through the interpreter that my father had been in Patton’s army. The man hugged me and told me, “Tell your father, ‘Thank You,’ I still remember!”

All it takes is for people to really start remembering.

In Christ, Amen ☩

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A prayer for when you are feeling forgetful…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for Your many gifts. But today I want to bless you especially for the gift of memory. Without memory we lose the benefits of our other blessings. Help me to always remember. Amen”

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No Matter the Risk…

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

This week ended with a nice surprise. Friday, I got a call from our son who lives on the East Coast. It seems that he had to come to Houston for work. While he had been in the area several days, his work schedule was such that he had not been able to call. However, his work was complete now, and he was flying home the next day, so he was wanting to come by and see us and (especially) his mom. To be fair to him, he wanted to come by the house and wave to her through the window. I told him that his mother needed a hug from her son and that whatever (minimal) risk might be involved was worth it.

Now there are those who would say, “No way! The risk is too great!” But what exactly is the risk of his seeing and hugging his mother? Well, in theory she could catch the virus, and she could be a part of the tiny percentage of people (here in Texas) for whom it is fatal. But maybe we should look at the other side of the question as well – the side that no one likes to talk about: What are the risks associated with Janet not getting a hug from her son?

Interestingly, the people who claim that any non-zero risk is too great, are often the same people who see zero risk in refraining from – in this case – getting a hug. Apparently, conditions like despair, depression, anxiety, addiction, overdoses, and suicide don’t deserve to be included in the “body count.” And what about the terminally ill who don’t know why they are dying alone to protect them from a virus that effectively has no impact on them? Or what about those with dementia who die in despair thinking they have been abandoned by everyone? And finally, what about the children and the psychological violence that is being inflicted on a whole generation? While it would be potentially instructional to find out why these things are so, I want to get back to Janet and not waste my time or ink on speculation.

The way I see it there were basically three options:

  1. Just don’t tell her about the call and pretend he was never here and never said he wanted to visit.

    2. Clearly no negative impact on Janet, but how about our son? His mother is dying and he knows there might not be many chances left to see her. Assuming that his emotional and/or mental state matters, let’s mark him down for depression and anxiety. And then we have to wonder what happens if this visit turns out to have been his last chance to see his mother, and he didn’t? Let’s add some guilt into the mix too.

  2. Let him come by, but maintain “social distancing.”

    3. Probably, the worst of the three options, as Janet and our son are both susceptible to additional depression and anxiety. Neither one knows when or if they will see each other again – at least on this side of the veil. Moreover, they can’t even express how they feel towards each other because there are some things you can’t say with words, even with perfect diction – which Janet no longer has.

  3. Let him come by, and let them talk, hold hands, kiss, and hug. Let them express their mutual love and say their contingency goodbye’s.

    4. According to the experts, there is some chance of cross contamination, and a very small (but non-zero) chance of a bad outcome. Although, we should probably have a discussion of what “bad” means in this context. On the other side of the scale, there’s a much larger chance of avoiding additional depression and anxiety – especially if this does turn out to be the last chance that they have to see each other.

So there are the three options. What would be your choice, and what does that choice say about who you are?

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Have you ever had one of those moments where you look at something and wonder when did our world go completely off the rails? For me, the most recent case was when I ran across a paper (I don’t remember where) that the US National Institute of Health published in 1992. The original author was one Dr Richard P Bentall who was at the time a professor at Liverpool University. The paper’s name is A Proposal to Classify Happiness as a Psychiatric Disorder. From the link, you can read the abstract, or you can download a PDF of the entire paper. When I read it, I didn’t know whether to laugh or cry. Basically, the good doctor’s position as expressed in his paper’s abstract is that: “…happiness is statistically abnormal, consists of a discrete cluster of symptoms, is associated with a range of cognitive abnormalities, and probably reflects the abnormal functioning of the central nervous system…” The author even came up with a name for the proposed condition:

Major affective disorder, pleasant type.

Ah well, as long as it’s a “pleasant” type, that’s something I guess. On the whole, the piece reads like a script for a Monty Python skit. For example, after the paper connects the dots between heavy drinking, obesity and happiness, it’s all too easy to visualize John Cleese using his BBC newsreader persona to intone a line like:

“Given the well-established link between both alcohol and obesity and life-threatening illnesses, it seems reasonable to assume that happiness poses a moderate risk to life. The common observation that happiness leads to impulsive behaviour is a further cause for concern.”

In short, being happy can kill you.

The problem, of course, is that this paper isn’t the script for a Monty Python skit. It’s real, and so it is very very frightening. The author’s fundamental assumption is that if you are happy (or want to be happy), you are basically out of touch with reality. A sentiment that you hear echoed daily on the evening news in 2020.

By the way, in case you are wondering how you can tell if someone is “happy,” apparently many happy people exhibit this strange physical affect or symptom called “smiling.” And no I am not kidding, that bizarre statement is in the paper, quotes and all…

Although the author’s assumption about “cognitive abnormalities” says a lot more about him than it does happiness, if you take this assumption, combine it with society’s belief that reality is whatever you think it is, and then stir in the inability of the psychiatric profession to even precisely define what a psychiatric disorder is, we are left in a state where anybody can be diagnosed as being mentally ill simply because they don’t agree with the majority opinion – a point that was made many years ago by the author’s countryman, George Orwell.

A major benefit this approach offers is that it allows any ruler to appear as, “An Angel of Light.” It sounds so much nicer for the overlord to say, “These troublemakers, these ‘happy’ people, aren’t really bad people, they are sick, they are mentally ill. After all, if they were sane, they would understand the hopelessness of their situation and would appreciate their need to be cared for by the government. If they were sane, they would understand that bettering oneself is at best an illusion, and at worse a psychopathic form of selfishness. If they were sane, they wouldn’t be putting hope in something that they can’t see or touch or sense, like some ‘God’ person. However, We are always benevolent, so We aren’t going to punish these poor hurting people, We will help them come to a proper understanding of reality. And rest assured that only the most troubled, or the most delusional will suffer any negative consequences at all – and even then it will be for their own good. We promise.”

But what does any of this have to do with being a caregiver? Or for that matter, being someone who needs a caregiver? Simply this: Who do you want making important decisions for you? Or even simple ones – like who you are allowed to see, or who you are allowed to visit? Someone who cares about all your needs, or someone who is simply pushing their own version of reality? Besides, I don’t know about you, but I have too much stuff on my plate already. I don’t have the time, energy or inclination to worry about someone else’s mind games.

Finally, does any of this sound far-fetched? Does it sound like some bizarre conspiracy theory? I would have thought so too – six months ago…

In Christ, Amen ☩

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A prayer for when you are feeling surrounded …

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the protection You give to Your people. But today I want to bless you especially for standing by me when the times are darkest and the way is the least clear. Thank you for being my protector and my guide. Amen”

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Getting Reacquainted with Old Friends

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

More symptoms this week. For some reason, Janet wants to have the TV on, always tuned to the same news channel, but she always has the sound off and she sits with her back to the TV so she can’t even see the screen. But even if she could see the screen, it wouldn’t mean anything to her because she can’t concentrate long enough to read the headlines that are scrolling by.

The bigger problem though is that she is becoming increasingly demanding. Looking back over the months and years, I am struck by how often I told myself, “This is the worst, it couldn’t possibly get worse than this!” Only to come back a couple months later and say, “I know what I said before, but this is different. This really is the worst, nothing could be worse than this!” And so it went week after week, month after month, year after year.

In fact, this week I wrote a letter to a friend, and I was trying to explain to them Janet’s current condition – and mine too. That discussion in turn got me thinking about how long it had really been, not since Janet was “Janet” (that’s far too nebulous a metric), but how long has it been on a more personal level. How many years has it been since we last shared a warm embrace? How many years has it been since we kissed? How many years has it been since we last shared a bed? – Or worse, how many decades since we shared a bed and she really wanted me there next to her?

I wish I didn’t have to, but let me remind everyone that these questions aren’t about sex. They are about the loss of intimacy. They are about isolation. You think two months of quarantine are hard? I can do that standing on one leg…

Finally, it’s also becoming increasingly obvious that Janet’s short-term memory is shot. It has gotten to the point that if “someone” gets angry and yells at her, 30 seconds later she will have forgotten that the incident had even occurred. So, no problem right? I can blow off steam and experience all the cathartic benefits of my self-taught primal scream therapy technique, and no harm is done because she won’t remember anything I said.

Well, not quite. She may not remember, but I do.

Growing up, I always read a lot.

During the summer, I would ride my bike to the local drug store every day to see if they had gotten in any new science fiction books. I always loved science fiction because good science fiction always dealt with the big “What if…” questions of life – like the way authors like Arthur C Clarke, Ray Bradbury and Philip K Dick used starships and aliens to explore very terrestrial issues like racism, bigotry, life, death, war, peace, freedom, and even what it means to be human. Then later, people such as Rod Serling and Gene Roddenberry used the new media of radio and television in the same way. Though to be fair, Roddenberry’s first heroes weren’t space explorers, but included a Highway Patrol officer (played by Broderick Crawford) and an intellectually over-qualified hired gun named Paladin.

Later, as I got older and my tastes shifted (slightly), I read Tolkien and C.S. Lewis, and in so doing, learned that the Lord of the Rings is not really a story about Hobbits, and it’s possible to have a very happy ending where everyone dies at the end of the book. But from these works (and especially Lewis’s more serious writings), I came to understand that so-called “Christian writing” didn’t have to be shallow and transparent. It too could be intellectually thick and thought provoking. Remember, it was God who said, “Come now, and let us reason together.” God wants His children to travel through His world with their brains engaged to the fullest extent that they can be.

So what does any of this have to do with right now? Well, during this government-imposed downtime, I have taken the opportunity to revisit some of the literary friends I haven’t seen in a few years.

First, I dropped in on C.S. Lewis. His words are always carefully chosen to mean exactly what he intends – no more and no less. Now I am nowhere near his level, but when writing these posts I do find myself editing and re-editing sentences until the words are just right, and they roll off the tongue when read aloud. Many people don’t know that much of Lewis’s work started as live radio broadcasts for the BBC. I believe (with only the flimsiest of evidence) that Lewis envisioned his words as being spoken, even if only within the reader’s head. For example, in A Grief Observed (which dealt with the illness and death of his wife, the American-born author and poet Joy Davidman, from cancer at the age of 45) he wrote:

“Nothing will shake a man – or at any rate a man like me – out of his merely verbal thinking and his merely notional beliefs. He has to be knocked silly before he comes to his senses. Only torture will bring out the truth. Only under torture does he discover it himself.”

Been there, brother…

About the only limitation to his writing is that most of it was in response to specific issues. What happens if a Christian author starts at “first principles” and logically presents the case for our belief, step by step. What you get is Francis A. Schaeffer. Writing from his home in Switzerland, he produced a series of books that, at the time, irritated and infuriated evangelicals because they started, not with the Bible, but with the world around us. Beginning with the deceptively simple question of “How do you explain the world?” He builds the case that the Judeo-Christian worldview is not just a reasonable answer to life’s big questions, or even the best answer. Rather, he shows that it is the only answer that fits all the facts.

Recently, I re-read his book He is There and He is Not Silent. The only problem I found with it is that I kept stopping to go back and check and recheck the copyright date, which was stubbornly stuck at 1972. I had to keep checking because the book reads like it was written last week. But be aware that Schaeffer is not an author that you just read. Earlier I used the term “intellectually thick.” To help you understand this term, for “thick,” you can if you like substitute: “dense,” “viscous,” “concentrated,” or “condensed.” Metaphorically speaking, Schaeffer’s intent is primarily not just to give you pat answers, but to send you on a journey of spiritual discovery, where every sentence is a sign post pointing to a path for further study and inquiry. A view which, if you think about it (and you should think about it), nicely mirrors Lewis’s comment about self-discovery cited above.

Moving on, the third author I want to discuss represents a completely different side of who I am. This friend is a poet from Lebanon (the country, not my hometown in Missouri) named Kahlil Gibran. Most people (or at least most Americans) will recognize at least one thing he wrote because President Kennedy quoted him in his inaugural speech with the famous line, “Ask not what your country can do for you…” Though, I suppose I should say, Kennedy misquoted him. The actual line as Gibran wrote it was, “Do not, as the politicians do, ask what the country can do for me, but ask what you can do for the country.” In his beloved homeland, Gibran was both a poet and a political activist.

I always appreciated his perspective because, when talking about Jesus, he spoke as someone who grew up in basically the same culture. One of my favorite books of his is Jesus, Son of Man. The book consists of a series of “interviews” with people who knew, or at least heard of Jesus. The people included disciples, family members, former customers of the carpentry business, and a few that had only heard rumors but who, nevertheless, were able to formulate complete opinions about Jesus.

To make it clear what his own views were, the last interviewee was identified as “A man from Lebanon, Nineteen Centuries Afterward”. But if you read it, don’t expect a clear-cut logical discussion or explanation. Remember that Gibran was a poet. And so in beautiful poetry he sadly describes how little the world has really changed, even after 1900 years. For Gibran, we still meet the characters from the Gospels every day: Peter, John, Mary, Judas – even Caiaphas and Annas, who were judges then and are judges now, and still living lives of entitlement. He then goes on to describe the excesses carried out in Jesus’ name and finally ends with a simple prayer:

And may God forgive us all.

But as with all really good poetry, its words are not simply read. Rather, they (and the imagery they embody) are to be read, felt, worried over, wrestled with, and ultimately understood on a level that might not be expressible in words. A friend of mine once said poetry is a way of talking about things that are ultimately un-talk-about-able.

The last point I want to make is that there is a good reason for all of us to look back from time to time at the ideas and people that influenced us. For myself, this reunion has allowed me to see exactly how deep some of these influences run. For example, whether anybody else can see it, to me Lewis has clearly impacted my writing style. Likewise, I have internalized Schaeffer’s advice to not only consider what people express outwardly, but also to probe further to discover the message behind what they express, as that message is often more important than the words, music, or art of their outer expressions. From Gibran I have learned that it’s sometimes okay to not understand God because He is, well God, and we are not.

In case you are wondering, no, this is not a complete list of my influences. For one thing, it makes no mention of family members. Likewise, it doesn’t include James Burke, Chuck Jones, Philip Melanchthon…

In Christ, Amen ☩

A prayer for when you are feeling introspective…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for how You, The Master Potter, has molded and shaped me. But today I want to bless You especially for all the people who have helped make me who I am, especially {   insert names   }. Guide me as I influence others, that I might have a similarly positive impact on them. Amen”

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Clouds Parting

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

I guess you could say that it all started with Frannie wanting to get her hair dyed. She had always had brown hair and, perhaps as a way to express her independence, she decided to dye her hair red – not a bright fire-engine red, but a nice natural burgundy color. So after some internal family turmoil (which is not part of the story) she purchased the dye and I agreed to help her dye her hair. The clear understanding was that no matter how it turned out, it was her decision, and her own responsibility

When the time arrived to “do the deed”, Frannie came to my room to let me know that she had everything set up. So I got up, took two steps, and the next thing I knew I was sitting on the floor cross legged with a bump on my head and Frannie kneeling next to me saying, “Are you Ok Dad? Are you Ok?” I had momentarily blacked out. After sitting on the floor for a few moments I got up and laid down on my bed.

My first thought was that I had recently lost several pounds and so perhaps my high-blood pressure medicine was at too high a dose. So I decided to stop taking it and wait a couple days to see how things fared. Two days later when I took my BP again, it was still very low so, at the urging of two daughters and a sister, I went to the local Emergency Room here in Pearland to get it checked out.

In the end, after interminable tests, two different sonogram examinations and numerous samplings of various bodily fluids, the determination was that my BP meds were too high which, through a series of interactions that would have potentially stumped Dr House, had left me severely over-medicated and under-hydrated.

The other significant side-effects of all this drama were that I was in the hospital overnight. From that brief respite, I discovered that Janet did just fine without me hovering around every second, and Frannie did an exceptional job handling things while I was out of commission.

PS: Frannie did get here hair dyed, and it’s really lovely!

Years ago, I wrote a monthly column for our church’s newsletter called Everyday Epiphanies – a title that I always liked due to its slightly oximoronic flavor. After all, epiphanies are supposed to be epic discoveries typically accompanied by things like burning bushes or God engraving commands in to your living room carpet with fire. They certainly aren’t “everyday”. This memory comes up for me today because this week has been one of epiphanies for me, but ones coming from very everyday sources.

My first insight was that when God is telling you that it’s time to sit down and slow up for a bit, you need to do it. Otherwise, He will sit you down – sometimes cross legged on the floor. The point here is that just because you have a job to do, that doesn’t mean that you are indispensable. God never sends you into a situation without backup. In my adventure this week, my backup turned out to be my daughter Frannie. And to show how deep a bench God has, He backed her up with a large supporting cast including my daughter Catherine, my sister Margie, our pastor, and a family from church that I’m not totally sure that I know.

Before this week, I had major concerns as to how well Frannie could handle things in a crisis. Now I do not. I see now that when push comes to shove, Frannie has the backbone to do what needs to get done. I am very, very proud of her.

The other insight that I gained this week was about the basic nature of mourning and grieving. The source of that epiphany was a short video clip that I posted to my timeline on Facebook. The video is the end of an obviously, much longer musical piece by a Croatian cellist named Stjepan Hauser. The music itself is the climax of an operatic aria, the title of which I don’t remember though I seem to remember hearing Luciano Pavarotti sing it.

The video is very moving in that it shows a variety of people: first responders, shop clerks, everyday people removing their masks and smiling. These images, combined with the music brought tears to my eyes – so I shared the video. However, when you share something like that, Facebook wants you to comment on it when creating the post, and the problem was that I had trouble describing my feelings. The music was very triumphant, but nothing has, of yet, been won. In fact, there is still a long way to go. Moreover, I’m not even sure that thinking about this in terms of “victory” and “defeat” is the right paradigm because both imply an end to the story. We may “defeat” this virus, but there is always more that needs to be done. In fact, there is an unending list of diseases (both contagious and not) that need to be conquered.

Likewise with grieving, there is no “end” to the process, there is no point (here on this side of the veil at least) where you can say, “Ok, that was a nasty job but it’s over, and I am free to move on now.” – a statement that pretty much sums up the myth of “closure”. Closure is the idea that at some point you will get to a place in life where having lost a loved one will no longer hurt. The only problem is that grief doesn’t work like that. Over time the open wound may heal, but like an injured joint that aches when the weather is changing, things are never quite the same as they were before.

In the end, I described the video as “coming out from under a cloud”. In this view, the cloud doesn’t go away, just as the pain, the loss, and the risk of disease, never goes away. The difference is that I no longer choose to live in the cloud’s shadow or let my life be ruled by it. Consequently, I may still have the pain or the fear, but I have decided to stop being the pain and the fear. Instead of railing against the darkness and rain, I will now begin moving towards the light.

Going through this transition is hard and unfortunately there is no set formula for how to do it. Moreover, it is no simpler helping someone else go through it either. As much as I would like, there are no A, B, Cs on how to do it that I can give you. But I can tell you that it requires many of the things that we have talked about before. Things like empathy so you can truly feel their pain; love to enable you to go through it with them; and a willingness to leave behind formulaic “solutions” in favor of (lots of) prayer that provides the insights to replace the formulas.

In Christ, Amen ☩

A prayer for when you are living under a cloud…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for light and joy that You bring into my life. But today I want to bless you especially for the support you give when my life seems dark and cloudy. Thank you for those You send into my life to support me, especially {  name supporters  }. Please show me how to pass along this divine gift to others. Amen”

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Of Heroes and Hypocrites

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

This week has been bad. I don’t know how else to put it. Bad is bad. The latest brouhaha was over whether Frannie could go over and see one of her friends. Janet’s pronouncement? “No, you can’t go because you didn’t ask my permission!” Just to be clear, Frannie is 29 years old. At that point I stepped in and pointed out that Frannie is an adult and doesn’t need to “ask permission” anymore. Things went downhill from there. This came on top of a week that started with me taking Janet’s phone away from her twice to keep her from calling and haranguing Frannie. Then when Janet caught onto that, she started sitting on her phone to keep me from confiscating it. In the end, I had to tell Frannie to just turn off the ringer on her phone.

Then today, Frannie and her friend made arrangements for Frannie to spend one (1) night at the friend’s house. When Janet heard about it, she “forbid” Frannie to go. Frannie was crying, Janet was yelling over and over about all the issues that Frannie and I had already discussed and had solved, like: “Who will take care of your dog?” and “If you go over there, who knows what she’ll have for you to eat? You’ll get FAT!” In the end, I had to tell Frannie to just go upstairs and ignore her mother.

Whether it was right or not I don’t know, but after Frannie was gone, I told Janet as directly and as controlled as I could that Frannie does not need her permission. And that her opinions and advice on matters were no longer required or desired. I again tried to explain to her the degree to which her only daughter is terrified to be alone with her. Then I went upstairs myself and cried.

This is not how marriages are supposed to be.
This is not how families are supposed to be.
This is not how life is supposed to be … but here we are …

Semper Prorsum

If you’re wondering about the title of this post, let me put your mind to rest: I am not going to be talking politics or public health policies – though an alert reader may find corollaries to both. Rather, I will be talking, as I usually do, about how these apparently disparate topics bear on being a caregiver.

One of the earliest conversations I can recall concerning heroism was with my father. Career Army, he fought in both WWII and Korea, and tried to volunteer to go back in to “help out” during Vietnam (but that’s a story for another time). Being too young to understand either what I was asking, or his response, I once asked, “Daddy, were you a hero in the war? Did you get any medals?” He answered that no, he wasn’t a hero. And as far as medals go, “I told them, I killed all the damned people you wanted me to kill. Don’t expect me to feel better about it because you hang a chunk of metal around my neck.” The thing to remember is that my father didn’t regret a moment of his service to this country, he just fully understood the cost of freedom: some people live and some people die – on both sides.

In a parallel vein, I saw a press conference this past week where an Italian doctor was asked about the heroes saving lives in hospitals, sometimes at the cost of their own. In trying to give his answer, the doctor broke down in tears and just sobbed for several seconds. When he finally regained his composure, he managed to get out his answer: “In our hospitals there are no ‘heroes’ or ‘heroines.’ Behind the masks are just everyday men and women doing extraordinary things for their fellow human beings.” His point is, of course, that heroes are not some supernatural form of life, but rather just people who do their jobs regardless of the cost. I don’t know what hospital he was from, or what his name is, but that man is my brother.

The other thread of this post is about hypocrites. Now, you might not be aware of it, but the English word “hypocrite” is derived from the ancient Greek word for actor “hupokritēs.” Something I just learned recently was that what the word literally means is something to the effect of someone, “who performs behind a mask.” The reference is to the fact that in ancient Greece, actors in plays wore masks so the audience could immediately recognize the character they were playing. This idea, of course, melded in my “unique” brain with the doctor’s statement and got me wondering about masks in general.

For example, where do I – or for that matter any of us – get the masks that we wear? Is there a difference between masks that I acquire for myself, and masks that I am given? How do I take the masks off, and if I do, what will I find? What are the risks of going out without a mask? I will leave most of those questions for adventurous readers to dive into because, truth be told, a book could be written about each. Instead I want to look at how these related ideas of “Heroes” and “Hypocrites” relate to being a caregiver.

Someone on the outside of the situation, in essence looking in, sees a hero. They see someone battling adversity and terrible odds to snatch from death even a tiny bit of life. They see courage, faith and stamina. In short, they see the hero mask. However, the caregiver acting behind the mask, the hupokritēs if you will, has a different view. They see unending effort that is only occasionally successful. They see fear, uncertainty and, more often than not, exhaustion. To those behind the mask, there is no grandiose crusade to make things better, there is just survival.

One problem that can arise is when the one behind the mask hears the acknowledgements of those outside. The outsider’s visions of reality can be so fundamentally different that all the caregiver can see in themselves is hypocrisy and a profound lack of authenticity. Or to put it another way, they literally feel like they are just “playing a part” and if their life was somehow turned into a movie, they would show up in the credits as simply, “Caregiver 1.”

Of course the outsiders usually interpret a caregiver’s aversion to attention as modesty, and describe them as “self-deprecating” when in truth, we are just trying to avoid the pain and embarrassment that we believe will result when people discover who we really are. And by the way, this same dynamic can even apply when one caregiver looks in on another caregiver’s situation and decides that they are so much better than I am. While I’m a fraud, they really are heroic! And so it goes, each person seeing the next as being in some way fundamentally better than they are at handling the same rotten job at hand.

Predictably, the result of all this unhealthy self comparison is guilt – not unlike what I talked about all the way back in our conversation on “Righteous Guilt.” You can fall into thinking that if my loved one just had someone to care for them like      {Insert Name}    then they would be so much better off.

The truth, however, is that our placement here on earth is not an accident, so while there will always be room for improvement because none of us are not perfect, there is no room for guilt because God, who could have picked anyone for your job, knew that you were the perfect fit.

In Christ, Amen ☩

A prayer for when you are not feeling particularly heroic…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the lengths that You go to daily in order to support me. But today I want to bless you especially for picking me to perform the job that I am doing. Thank you basing Your choice on Your foreknowledge and not my track record. Amen”