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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”

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Doing What You Can

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.

One of the challenges that Janet’s illness has always presented is that I am an engineer. In case you are not an engineer, or don’t know one, the thing that you need to understand is that engineers are genetically predisposed to wanting to fix things. In fact, if the truth be told, that’s probably why most of us became engineers in the first place.

The challenge, obviously, is that there is nothing about HD that is fixable. Regardless of what therapies Janet tried or the medicines she took, the eventual prognosis remained the same – perhaps delayed a bit – but still the same. So if physical death is, in the end, inevitable, the only thing that I can see left to do is to make the transition as easy as possible by giving Janet a sense of completion for her life.

You see the thing about my wife is that, above anything else, she has always considered herself a teacher. So the first thing I did was to contact the teacher association where she was a member and let them know about her health. In the letter to them, I first reminded them that she was president of their organization from 1978 to 1980 – in addition to holding down other positions in leadership.

Next, I reminded them how (teaching in the days before computers and official recognition of “special-needs” kids) Janet worked every night to manually develop customized lesson plans (now called IEPs) for each one of her math students. She was also on the association’s Legislative Affairs committee where she worked tirelessly for education reform and even addressed a state legislative committee hearing at the state house pressing for the rights of special needs kids.

By the way, if you are a girl and liked to play sports in high school or college you owe a personal debt of gratitude to Janet. While teaching and coaching girls’ basketball (Janet in her prime was only 5’4”), she worked hard for the passage of a Massachusetts state law that guaranteed equal funding for girls sports – a law that went on to serve as the blueprint for the Title IX federal statute.

A few years after she was president of the teacher’s association, she left public school teaching due to layoffs, but she continued teaching in the corporate world until our daughter Frannie was born with learning disabilities. In first grade, the “experts” told us that our daughter would never learn to read or write, and math would be totally incomprehensible to her. In response to that report, Janet’s teaching job became working with our daughter to get her through school. After working with her mother for 12 years, our daughter graduated from high school with a real diploma (not a certificate of attendance) and for confirmation at church, she read the Gospel lesson.

In response to this information, Janet got a very nice card from the association acknowledging the contributions that she made to the children of Weymouth Massachusetts. The card was signed by the current association president.

I also contacted the woman that was her housemate when we met. The woman, who is Jewish, wrote Janet a wonderful letter and promised to remember her in special shabbat prayers of healing and comfort the Mi Shebeirach (מי ייתן). In addition, a few days later, my wife got a letter from a different friend who heard of her ill-health through the grapevine.

So what was the point of this effort? Simply this, Janet can no longer read on her own so she had me read these letters to her – literally dozens of times. They remind her of the impact that her life has had, and the love that it has fostered. With conditions like HD, the patient can experience a profound sense of depression and hopelessness in the end stages of the disease. The letters and tributes that she has received are physical evidence that she can see and hold in her hand that her life had value and meaning. They are gifts to her from people to whom she gave so much.

But I got something out of it too. After 35 years together you would think that I would know all there is to know about her, but not so. I learned new things about who she was, and the things that she did for others. For example, I learned that her former roommate had been going through a tough patch in her life and literally had no place to live, and without hesitation, Janet took her in. I also learned about how she stood up to sexual harassment in the workplace by a fellow teacher who seeing her drinking from a water fountain and mistaking her for a student, patted her on the butt and told her, “Better get to class young lady…”

Finally, I want to mention that more than 2 years ago, Janet made the decision to donate her body to the McGovern Medical School at the University of Texas to help future doctors learn human anatomy. When she made arrangements for this donation, Janet referred to this as her “last teaching assignment”.

Of course all of that is, metaphorically speaking, the silver lining in a very dark cloud. And a cloud that is, unfortunately, being largely ignored. Despite the propensity of people to mouth the words similar to those from the great poem by John Donne, For Whom the Bell Tolls, I am often reminded of a line from Orwell’s novella The Animal Farm where the fascist leader of an animal revolt (a pig name, appropriately enough, Napoleon) proclaims, “All animals are equal, but some are more equal than others.” Even so, we find ourselves today categorizing and prioritizing things that should not be graded, things like equality and human worth.

At times it feels like there is a world wide shortage of equality and the only way to make someone new equal is to take equality from someone else. However, his presumption ignores the fact that equality is not something granted to you by some law or government, but is a gift that you receive from God the moment that you come into being. In the same way, there are people who will read my words above and become angry because they will interpret my praise of the person that my wife was as in some way diminishing the life and legacy of their loved one – again as though there isn’t enough “human worth” to go around for everyone on the planet.

So let me leave you with this thought to ponder. The kind of Orwellian redefinition that we see in society today has no impact on our loved ones that are gone, and very little on the ones like Janet who remain, but are at the end of their journey. Janet has ceased caring about what other people thought, or thought about her, a long time ago. The question is what impact these changes have on those of us who remain behind – and whether we are going to tolerate them? Maybe we aren’t headed for an apocalypse after all.

In Christ, Amen ☩

A prayer for when you wonder what good is left in the world …

“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 light that You bring into an otherwise dark world. But today, I want to especially bless You for people like {insert the names of those you are thankful for} who carry the torch of Your love to others who are residing in the darkest of places. May the lives have been so enlightened, rise up and call your light-bearers ‘blessed’. Amen”

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Mary lost her son, a story of Holy Week

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 I’m doing something that I have never done before. You can call it a mindful memorial, a tribute, or just trying to deal with the reality of being surrounded by death from various neurodegenerative diseases – the actual label doesn’t really matter, I guess. On any given day, the various support forums carry a litany of death from a multitude of causes that have nothing to do with viruses, and so unfortunately draw little attention.

These brief notices are typically written by the deceased’s caregiver and naturally talk about how wonderful their late loved one was – which is as it should be. But something can get lost with that approach to memorialization: the caring people left behind. These short obituaries talk about the deceased’s challenges and bravery in the face of adversity, but rarely mention the sacrifices that the caregiver makes to allow their loved one to reach the end of their days with some dignity. Neither is it mentioned that these extraordinary measures are undertaken knowing that they won’t change the long-term prognosis even one single bit.

So this week I want to talk about one particular HD-related death from the standpoint of the patient’s caregiver – his mother. Please don’t see this choice as in any way denigrating the contributions of people with other relationships. Fathers lose daughters, children lose parents, and spouses lose each other, and they all perform noble service.

Rather, my choice of subject to stand in for the hundreds of thousands of caregivers worldwide was simple and pragmatic. It is someone that I know personally, and her son is also the fourth family member with HD that she has cared for.

The mother’s name is Maria and she might be familiar to some of you. She lives in Italy and over the past month I have posted several prayer requests for her and her son Giuseppe. So many of you have responded that Maria was, at one point, left speechless. She thought she was the only asking God to give her strength. Not quite! And for the record, I am incredibly proud of the family we have assembled here.

To make a long story short, Giuseppe had JHD and like so many of his countrymen, contracted the coronavirus. Maria spent many long hours living at the hospital helping to care for him. In fact, at one point she went 48 hours without sleeping or eating, and ended up collapsing on the floor. She said the nursing staff was initially afraid that she had suffered a heart attack, but she was just exhausted.

Then during Holy Week, the end came. Since then, there has been an unending stream of details to be managed and arrangements to be made. As I was thinking about this today (Wednesday, April 15th), I started writing. Even though I never met the young man, I had come to feel very close to him, despite his being on the other side of a very large ocean. So the writing was initially to clear my own head and help deal with my own sense of loss – though, to tell the truth, I felt a bit embarrassed to even mention my feelings.

Eventually, my feelings fell to the wayside and the writing morphed into a series of thoughts on motherhood in general, and Maria’s loving dedication to her family in particular.

I have been thinking about it and it seems to me that, for mothers, raising children involves a long series of “letting go” events. For nine months you carry them in the womb but even here, at the very beginning, they are a separate person, so there is a relationship with the child, a connection. The paradox is that they are at once, in you and yet distinct from you. They have their own gender, their own blood type, and their own heartbeat. While this heartbeat may from time to time synchronize with yours, it is unique.

This point becomes obvious at birth when the umbilical cord connecting the two of you is severed and they can become a fully independent human being. But still, you feed them from your breast and change their diapers. Then one day you have to let go of that connection because they no longer need the same degree of attention. I well remember the poignant moment when my Janet realized that she had just breast-fed our son for the last time. But he made it clear that, while milk was all fine and good, he wanted solid food – and lots of it!

After that, life seems full of letting go events that strain, redefine and restructure the connection: potty training, starting school, dances, dating, graduation, college, marriage, and parenthood – each with its own unique set of letting go moments.

But sometimes something goes wrong with that neat plan, and there are other things that a mother has to let go of. When Maria realized that Giuseppe had the Juvenile form of Huntington’s Disease, she had to learn to let go of his laughter and smiles, and eventually the personable young man that he was. Then in a kind of hellish regression, she had to return to feeding and changing him, and doing her very best to care for his most basic physical and emotional needs. But then, doctors and nurses became involved.

I will always remember the message I got from Maria when Giuseppe was being taken to the hospital. I am just learning Italian, but even without running the text through Google Translate, I recognized the words or phrases for “my son”, “hospital”, “intubated”, and “panicking”. The resulting online prayer request is when many of you became acquainted with her name, and there were dozens of you. (Thank you Pamela at the Huntington’s Disease Prayer Support Group!)

Eventually, in the final stages, Maria had to face letting him go completely in death. But even then, her mother’s love was so strong that she continued hanging on, becoming a living “la Pietà” mourning a son, not of marble, but of flesh and blood. She cradled him, craving one more moment of human contact. Soon even that was gone, as people explained to her about “contagions” and the necessity of cremation. She had to let go of even his physical body. In the end, it appeared that all she would have left to show for a lifetime of love and commitment, was just a few handfuls of ashes.

But no, God does not leave His children so destitute. Maria also has memories: The warmth and intimacy of suckling him that first time in the delivery room. The look of brave determination on his face as he headed off for the first day of elementary school. The pride he showed at graduation, and many, many more treasured moments that “moths cannot eat nor rust destroy.”

But in addition to the memories, God also has promises for the future. Promises of renewed hope and love that can, frankly, be so hard to hear while we are in the midst of the mourning. However, we can be confident that these promises have no “expiration date” and their time will come. For example, as people of faith, we have the assurance that death is not the hopeless end to an essentially meaningless life. Rather, one of the great lessons of Easter is that, as strange as it may sound, in death there is healing. When Jesus appeared to his disciple following the resurrection, He still bore the marks of the crucifixion. The difference was that they were no longer bleeding wounds, they were healed and Jesus was none the worse for wear. And so it is for Giuseppe and all our loved ones: There is no HD in heaven.

But for right now those around Maria are supporting her, and while she is so tired and full of grief that she doesn’t at times know which way to turn, she is not the kind to stay down. The life of a Christian in this world is not about “either/or” but “both/and”. We aren’t confronted with the alternatives of either sinner or saint, or either being faithful or grieving. In both cases, we are “both/and”. Always remember that the opposite of grief is not faithfulness, but rather apathy.

So if you have been praying for Maria, please continue to do so – which if you thinks about it is another case of “both/and”. She is both in need of prayer and already under infinite God’s care. To protect her from total despair, God is continuing to fill her heart every day with fresh hope, and the rod of steel that He placed in her spine means that this time of pain and sorrow will not leave her permanently bowed down.

This loss will not be the end of her, and the testimony of her story is yet another assurance that ours won’t be the end of us either…

In Christ, Amen ☩

A prayer for when you mourn…

“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 wonderous promises. But today I want to bless you especially for understanding and sanctifying our grief. In scripture we see Jesus first weeping at the tomb of his friend Lazarus, and then reassuring the two grieving sisters that in Him there is life regardless of how things look at the moment. And then again, we have Jesus’ reassuring words, ‘Blessed are those who mourn, for they shall be comforted.’ Thank you for the opportunity to experience the grief of separations so we might experience an even greater joy at our reunions. Amen”

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Thoughts from a fairly good friday

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.

Perhaps because we have all been confined here at home due to this virus, or perhaps just because things always get worse, this week has been something of a mess. Early on, I had hopes that things might get a bit better because Janet and I talked on the phone with her neurologist and Janet agreed to try an additional medicine (Klonopin) to help with her mood and chorea. Unfortunately, in the 24 hours between the phone call and being able to pick up the medicine, Janet changed her mind again and decided that she would try it, but only after her bowels got sorted out. Translation: She’ll take the new med when pigs fly!

Subsequently, I have spent a lot of time this week crying over losses – a situation exacerbated no doubt by my inability to sleep through the night. The world seems overflowing with things to fret about. Things like dear friends being in peril, from viruses – and other things. Then there are the hopes that seem to revive and then deflate, all within a few hours. As roller coasters go, the one I’m riding now pretty much stinks. The problem of course is that with a physical ‘coaster you get to experience thrills and chills, but in a safe environment where no one is ever really in danger. Unfortunately, with the one that I’m on, people really die. The “thrills and chills” come from trying to figure out whether they are going to die now or later.

People who have been following this blog for a while know that my Janet most-likely inherited HD from her father. Long time readers will also remember that he and I never got along very well. In fact, harsh words often passed between us. Or they did at least until one day when Janet and I went to see him while he was in a hospital towards the end of his life. At one point he got Janet and her mother out of the room on the thinnest of pretenses:

“Mena, why don’t you take Janet and show her the cafeteria in this place, it’s very nice.”

The cafeteria? Really? What could this be about? As soon as they were gone, he called me to his bedside and held out his right hand. When I took it he said,

“I just wanted to tell you that I’m sorry. You are a good man and I am glad you married Janet.”

I thanked him, and shook his hand. After that we sat quietly until the ladies got back from their “tour” of the hospital’s culinary facilities – each of us deep in our own thoughts. A few weeks later, Janet’s dad was dead.

The reason that I am bringing this up, is that this morning, Janet (in a rare moment of mental and verbal clarity) told me that she was grateful for all the things I had done for her, and that I had been a “good husband”. Soon, however, the HD closed back in and I was back to being an insanely huge mistake in her life.

Please excuse the language, but roller coasters are a bitch.

Today, as I write this, it is Good Friday. To modern Christians, it is certainly a strange name for an admittedly strange holy day. It commemorates the death of Jesus on the cross. Especially now, in the midst of a pandemic panic, why would that death, or any death for that matter, be considered “good”?

And what are we supposed to do with Good Friday anyway? We certainly don’t run around telling one another, “Merry Good Friday!” The problem with Good Friday is that the holiday and the name come from a time before we (individually) became the center of the universe. It was born out of a culture where sacrifice was seen as a noble thing – and not at all stupid, offensive or degrading. But mostly, it came from a time when people were able to maintain perspective about the importance of experiences and situations.

In some ways, a lack of perspective may be a uniquely American problem. After all, our mere 250 years of existence is quite literally the blink of an eye in the overall flow of history. Not long ago I was talking to someone from Italy about the virus and my concern for the health of her family. Her advice: “Don’t worry ahead of time. God takes care of things.” In these situations, Italy has the advantage of millenia of historical perspective. Within just the past 100 years, they have had to deal with not one but two world wars that were fought at least partially within their own national borders. Unlike the US, for whom both wars were “over there”. And when the pandemic did come knocking, they did what needed to be done, but didn’t abandon community. Instead they moved to their balconies and had nightly distributed concerts and community sings. They played, sang and cheered for each other because they knew that when this plague passed – and plagues always do – life resumes. So while the loss of life is tragic, only the loss of community would be truly catastrophic.

By contrast, here people are in a tizzy over the fact that 100,000 people could die from this virus while ignoring the fact that this total is still thousands short of the death toll that the seasonal flu racks up every year. To be clear, if the death toll rises that high, every one of those deaths will be a tragedy, but how about a little perspective? Look up the number of people who die from things like heart disease, cancer, suicide or even childbirth. Moving closer to home, what is the annual death toll of degenerative neurological diseases? Although there are arguments over the exact number, some reports show that for Alzheimer’s alone, the US total could be over 500,000. Every. Single. Year.

Perspective…

Another thing that would be nice is to be able to get the facts of what we are going through right now with a lot less sensationalism. The other day I saw a news story that described in excruciating detail (and with pictures!) how right now, all over the world, there are literally millions of medically untrained senior citizens providing the day-to-day care for loved ones with terminal diseases! This revelation might have been earth-shattering to the 20-something that “discovered” this fact, but for many of us, it’s not a revelation, it’s our life. Want to see a really scary number? Research the number of these “untrained senior citizens” (i.e. caregivers, like us) that die every year, decades before our peers. In one sense, this lack of recognition feels very familiar – I was, after all, in SAC (Strategic Air Command). Who knew or really understood what we did either?

Furthermore, consider this very blog. Who in blazes am I to be advising others? I’m just another medically untrained senior citizen who is trying to pass along what I am seeing and feeling and experiencing, and praying to God that I am doing even a few things right. I don’t enjoy flying by the seat of my pants, but what else is there? If Janet didn’t have me, she wouldn’t have anyone.

The bottom line is that we are all amateurs on this bus. We all have things to contribute and to learn. None of us are really prepared for the jobs into which we have been thrust. We all lean on and depend on one another. We all have a dirty job but we do it, even though it often means sacrificing years off of our lives. So perhaps Good Friday is, after all, the perfect time to acknowledge the “good” work we do. But it is also, without a doubt, the time to remind ourselves of a few things.

First, we don’t live in a “safe” world. None of us are guaranteed even the next five seconds. Something could happen before you finish reading this paragraph, and anyone who says otherwise is lying to you. Bottom line: life has a 100% fatality rate. The question is not whether you will die, the question is whether you will live before you do so. Second, this work isn’t about us – that is why it is called service. Consequently, whether we realize it or not, what we do does get noticed. Even without accolades from important people, ribbons or medals, what we do is seen by Someone. Third, we are never really in this fight alone. In addition to the globe-spanning support community that we have created for ourselves, The One who notices, is also The One who blesses, strengthens and sustains us. In the end, that support is our only real source of hope. And without that hope, we are (as Paul pointed out) above all people, most to be pitied.

In Christ, Amen ☩

A prayer for when you feel that the world is on your shoulders…

“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 world in which we live and the protection that You give us. But today I want to bless you especially for the strength and insight You provide to me. It is so easy for me to fall into the trap of believing that I am just a small cog in a very big machine. I know that most of the time, I can’t comprehend what it is that You are up to, but thank you for showing me the pieces that I can understand. Thank you for the courage to continue on when I seem surrounded by darkness and pestilence. I pray, Lord, that You will show me how to be a beacon of light and hope. Amen”

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So What’s There to Lose?

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 past two weeks, the worldwide Coronavirus panic, has impacted the Porter household in a couple ways. First, my company has been determined to be in a critical industry, so my job is safe. However, it was also determined that I don’t have to be onsite to do my work, so I am working out of the house for the foreseeable future. This week is the first full week that I am home.

The second impact has been to answer an unfortunate question. I have been trying, for some time, to sort out exactly what relationship still exists between Janet and I because it doesn’t take a genius to realize that things are clearly not as they were on our wedding day. As I have shared here before, I have been reading and thinking a lot about what psychologists call ambiguous loss, and I have gotten as far realizing that I am stuck somewhere between being her “husband” and her “male nurse” – two positions with very dissimilar job descriptions. So I have begun trying to understand what I have already lost, and what else the disease will likely consume as it continues to progress.

The first time I really began to understand what HD meant in concrete terms was shortly before we moved from Ohio to Texas and our son came for a visit. He and I were out together one day doing some shopping and I took the opportunity to try to explain to him some of the troubling behaviors that I had noticed were developing in his mother. So I cautiously explained all the things that I had observed, being very careful to include only situations that I could easily justify to him. I was so careful because I was sure that his reaction would be, “Oh no Dad, you must be wrong! Not Mom!”

Instead, what I got was a shrug and, “Yeah, but Ma has always been like that…”

As we continued talking, it became clear that my college-age son had a much better insight into what was going on than I did. He explained to me that when I was away for work she would “make nice” while I was home on the weekends, only to let loose again when I went back to work. It was clear that my son’s memories went back a lot further than her diagnosis.

Eventually I had the opportunity to listen to webinars on the HDSA website that talked about the progression of the disease before the patient is diagnosed. One of the things that researchers had begun recognizing was that while the physical symptoms were typically what drove the patient to go see a doctor, the emotional and cognitive problems could start much earlier, often decades earlier.

The most immediate result of this information was the realization that it was possible – indeed likely – that our two children had never known their mother when she was not exhibiting the effects of HD. That was shocking enough, but as a result of my recent inquiries into what I had lost, I came to suspect that the same might be true for me as well. Perhaps, on our wedding day, Huntington’s Disease was already in the picture, already playing a role.

Goodness knows, in hindsight, there were warning signs aplenty. A friend that has known Janet for years once told me, for as long as she has known Janet there were times when she could be “difficult” due to her temper. Then there was the fact that Janet never liked holding hands while we walked. She said that it threw her “off-balance.” I always took that explanation to mean that she just didn’t like holding hands, but now I wondering whether HD had already started degrading her balance, just a bit.

So if I circle back to my original question, “What have I lost?” And I discover that the loss might not be so ambiguous after all. One of the things that I have clearly lost was a fairy-tale past where everything was “OK” before the disease. I realize I made a lot of excuses for her over the years, such as the time when I explained to the cop living next door to us in Ohio that I had a black eye because I walked into a door in the night. He just stared at me with a look on his face that said, “Do you have any idea how many times I have been told that crap?” But all he said was, “Are you sure that’s what happened?”

Looking back, it’s very likely that the Janet I miss, the “real” Janet that I have talked about so often, never really existed at all except in my hopes and dreams. The real Janet was the person that she would have been had she been able to free herself from the baggage of her father’s abuse. That was the battle I was prepared for and was more than willing to fight. Unfortunately, that was not the battle I got.

Just as she inherited the HD gene from her dad, she also “inherited” the anger. However, that inheritance did not come about through the action a DNA molecule, or even a probate court. Rather, it was passed on through an endless series of assaults, such as being slapped across the face multiple times because she didn’t know what page of the missal a particular prayer was on, or being verbally derided for not knowing what country produced cinnamon. And if that load wasn’t enough, when the HD began to manifest itself, she got new anger of her own. Anger about a world out of control, anger about failed expectations and unfulfilled promises. Every day now, anger piles on top of anger to create an unstable emotional tower that is doomed to fail when it can no longer support its own weight.

So where exactly does that leave me? What I’ve lost is a fairy tale. What I’ve gained is a large dose of castor oil-flavored reality. The “smart money” would probably tell me to cut my losses and get out before it gets worse. The only problem with that advice is that I have never been particularly “smart” in that way. In point of fact, I still believe in such quaint and corny ideas as integrity and keeping your promises – even when the only thing left of the original relationship is The Promise.

Consequently, I will for now let “husband” fall to the side and find fulfillment in my new position as “male nurse”. So should I consider that move a demotion? No, not really. You see my core desire has always been to give Janet what she needs, and she doesn’t really need a husband right now, what she needs is a really good nurse.

In Christ, Amen ☩

A prayer for when you are a little slow…

“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 always knowing and providing what the cosmos needs. But today I want to bless you especially for truly understanding what is needed in my world. There are so many times that it feels like I am slow to understand hard truths, but then I see that it’s just that You made me idealistic and hopeful. Thank you for making me who I am, and using me just that way. Amen”