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Brain Drain

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…

Janet seems to have made peace with the security cameras. In addition, she has accepted the need to wear the medical alert buttons. So much so, in fact, that she is now reminding me that she needs to exchange pendant for wrist strap or vice versa.

Emotionally, Janet is continuing to grow calmer – even when Frannie gets angry with her for not using her walker. Just today, after weeks of wanting to be left alone, she told me that she was lonely and that she loved me.

Unfortunately for all the gains in other areas, Janet still resists using the walker. This resistance is troubling because, when standing, she is constantly weaving back and forth. But perhaps that it is her final act of defiance to the disease that is killing her. I have the growing conviction that Janet will not be one who slowly fades away. Rather, in the words of Dylan Thomas, she will:

“Rage, rage against the dying of the light.”

From my Janet, I would expect nothing else…

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First used in the UK at the end of World War II, the term “brain drain” described the flight of European scientists and technologists to North America – typically the US. For example, much of the early US space program was populated by German expatriates who got their start building V2 rockets for the Nazis. Following the first successful launch of a V2 (that landed in London to devastating effect), Werhner Von Braun was heard to comment to a colleague, “The rocket worked perfectly, except for landing on the wrong planet.”

The point is that while the desire to leave a war-torn continent is more than understandable, the effect of this brain drain was to deny European economies access to some of their brightest minds, just at the time when they were most needed.

On the support forums I follow, I see an analogous problem – at the end of their personal “war” against a particular chronic terminal illness (i.e., as soon as their loved one succumbs), the caregiver often leaves the support forum.

Again, this desire is an understandable reaction: after all, people can be exhausted from years or even decades of caregiving. Alternatively, with their loved one dead, perhaps they feel like they no longer belong, or maybe they feel like they have nothing more to contribute. However, regardless of the reason, the choice to leave does have consequences.

The most drastic consequence for the former caregiver is that simply dropping everything and “retiring” can kill you. As a case in point, consider the life of General Daniel “Chappie” James.

Gen. Daniel “Chappie” James Jr.
Gen. Daniel “Chappie” James Jr. (U.S. Air Force photo)
Known for a deep and abiding patriotism that manifested itself in exemplary service to the nation, in 1975 he became the first African-American to reach the rank of four-star general in the United States military. His career spanned from World War II (when he helped teach some of the famed Tuskegee Airmen to fly) through Vietnam. He retired January 31st, 1978 after 35 years of honorable service, at the age of 58. Just three weeks later, he died of a heart attack on February 25th. The consensus at the time was that retirement killed him. As a result of his untimely death, the Air Force instituted a mandatory training program for all retiring senior NCOs and officers to teach them how to be retired.

But, short of death, there are other problems as well: the person leaving could be abandoning a source of support just at the time when they are going to need it most. The type of support you need might change (ever so slightly) but the need doesn’t go away. Others may have a different opinion, but to my mind, caring for a loved one with any sort of chronic terminal illness initiates you into a family with ties that outlast everything, including death – maybe, especially death.

So even though my Janet is currently still alive, I had to confront this same issue as I compiled these blog posts into a book. Specifically, I had to decide what to do about the fact that the story didn’t seem to have an ending yet. In fact, a couple publishers asked me rather pointedly about that narrative “problem.” Specifically, they wanted to know how I could publish a book with no ending?

To answer that question for the publishers (and the readers too) I wrote this in the book’s Epilogue:

… such an ending (Janet’s death) would be, in a sense, totally arbitrary in that it won’t really be the end of the story. In that respect, I am reminded of the war-time words of Winston Churchill: “Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.”

Indeed, as long as anyone remains alive with this sort of disease, there will never really be an end because the world is like a still pond and each life that God drops into it produces ripples. These ripples, in turn, interact and produce unseen effects long after the lives that created the ripples have passed from human memory…

So given all that, how do you specify an “end” that isn’t totally arbitrary?

Like the television signals carrying the original live broadcasts of “I Love Lucy” and “The Honeymooners” out into the universe, the ripples of Janet’s life will continue to expand outward causing new, ever more distant effects. This is why, for myself, I have made the decision to keep writing after Janet’s death and to continue for as long as God gives me the words to say, the strength to type and the eye sight to find the keys (I do not touch type – I’m more of an advanced hunt-and-peck kinda guy).

Finally, I would be remiss if I failed to point out that the loss of participation also impacts the groups themselves in a very predictable way: loss of expertise and knowledge. When someone new joins, they have a few common questions that boil down to some pretty basic concerns:

  • What happens now?
  • What’s going to be the impact on my loved one?
  • How bad will it get?
  • I’m afraid. Is this survivable?
  • What happens to my family?
  • What happens to me?

Only someone who has been through the entire experience can answer all those questions. Only someone who has been through and seen the worst, can with authority say to another, “Yes, you can do this.”

And then moving beyond those basics, there are the hundreds (of thousands) of everyday questions about how to do this, or that. So remember experience brings wisdom, wisdom imbues credibility, credibility instills confidence, and confidence is transformative.

A recurring theme of my writing is that our everyday experiences are preparation for what’s coming. The things that you have endured have been to prepare you for the future. Now is your time.

In Christ, Amen ☩

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A prayer for when you feel drained…

“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 help You give, the salvation You provide and comfort with which you surround us. But today I want to bless you especially for the opportunity to share with and comfort those who are just starting on the road that I have been treading. Please show me how to give them hope and share with them a measure of the strength that you have given me. Amen.”

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July 4th, 2020

As is my habit, this post is to commemorate a special day. If you are wanting to read the last regular post, you can find it here. If you want to read the next regular post, standby for 24 hrs. It’ll be along presently…

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed,

That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness.

Prudence, indeed, will dictate that Governments long established should not be changed for light and transient causes; and accordingly all experience hath shewn, that mankind are more disposed to suffer, while evils are sufferable, than to right themselves by abolishing the forms to which they are accustomed.

But when a long train of abuses and usurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it is their right, it is their duty, to throw off such Government, and to provide new Guards for their future security.

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Those revolutionary, disruptive, even subversive words are excerpted from the Declaration of Independence of a territory that would, after a war, become the United States of America. These words come right after the preamble (which explains what they are going to say) and right before the authors enumerated their (many) grievances against King George, et al.

Of course it goes without saying that we, as a nation, are still growing into those words. We used to have private ownership of slaves, now we do not. Women used to be excluded from having their voices heard at the ballot box now they are not. Political, ethnic, racial and religious minorities were routinely and legally excluded from fully participating in society, now they are not.

We have undoubtedly come a long way, and just as assuredly, we still have a long way to go. But isn’t that rather the point? Lofty words such as these function to establish goals that are, by definition, always just beyond our reach.

The problem we have today is that too many people are more concerned with feeling good about themselves than they are about growing into anything. Consequently, they set small goals, but, failing to meet even those, they in the future set still smaller goals. In the end, it seems like the only goal to survive this constant dumbing down is the goal to “only do what makes me feel good right now.”

But what happens when that intent is thwarted? The traumatized victim throws a temper tantrum like the petulant little child that they (emotionally) are. For example, consider the video of a hysterical woman sitting on the ground and screaming, in a theatrical attempt to drown out the sound of a U.S. President being sworn into office.

By the way, the word “hysterical” has two possible meanings, and both are applicable here.

But I digress: my point in this post is to talk to the remaining adults and point out that the woman in the video wasn’t just screaming “NO” at the man taking the oath. She was screaming “NO” at the process that put him in office. She was screaming “NO” at everyone who voted for him. She was screaming “NO” at the right of a free people to freely decide whom they want to have lead them. Therefore, in a sense, she was screaming “NO” at people who are longing for freedom anywhere on this planet.

The basic (self-evident) truth is that the Creator of humankind bestowed on all of His creation the same right of self-determination, so “NO” to one is “NO” to all. Unfortunately, the alternative to an “unalienable right” is temporary “permission” from a despotic government.

The job of proper government is not to bestow rights – that function is, in fact, unnecessary. The proper role of government is to protect, here on earth, the rights that we received as a gift from on high. Rights which include, among other things, “… Life, Liberty and the pursuit of Happiness …”

In Christ, Amen ☩

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A prayer for when you are feeling grateful for your freedom…

“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 unalienable rights that You bestow upon all people. But today I want to bless You especially for blessings of prosperity that, despite our many flaws, You continue to shower over us. Amen.”

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What… You too?

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…

So Janet now has two security cameras watching her, and between the two of them I can track where she is most of the time. I may need to get another for the kitchen, but we’ll see. The nice thing about the ones I purchased (which are made by Samsung) is that the setup was super simple, and it feels so nice to be able to check up on her anytime. Unfortunately, Janet doesn’t always feel the same.

Janet keeps wanting to stand up and walk around the apartment without her walker. One afternoon Frannie and I had to run a couple of errands, so Janet took our being out of the house as an opportunity to get up and have a bit of a walkabout without being scolded – or so she thought. As soon as she got up, the motion detector on the video feed tripped and I got a notification on my phone.

I opened the app and sure enough, there she was, walking around and no walker. The cameras also have built-in mics and speakers, that allow two-way communications. So I tapped the microphone button on my phone and said, “Janet, you aren’t supposed to be walking around. Go sit back down!” A couple seconds later I could hear my words coming out of the camera’s speaker. She looked startled, but she did it. This scenario played out twice more, but the second time when I tried to call up the camera, it was off-line – she had unplugged it.

When we got home, I reminded her that those cameras are helping to keep her out of a nursing home and that they need to stay on. She agreed, and promised not to disconnect it again, but just to be sure, I found a place to plug in the camera that she can’t reach…

Jan has also been having a lot of trouble grasping (a) how the medical alert system we just got works, and (b) the importance of wearing either the bracelet or the pendant at all times. For that piece of technology, I’m trying to keep it as simple as possible: “If you need help, just push the button.”

The service we have uses a box that is essentially a speaker phone on steroids. When Janet pushes the button, the box calls the service and an operator asks her if she needs help over the (very loud) speaker phone. If either Janet tells them she needs help, or the operator doesn’t hear any answer, they will start working their way down the contact list, calling first me, then Frannie, and finally 911.

A nice feature is that the service provides us with a lockbox for the front door (like realtors use) that contains a key to the door. This box allows the EMTs to come right in without needing to wait for the police to arrive and break the door in.

Now all I have to do is convince her to use the button. Today she fell and cracked her head. No major damage, but it bled like crazy for a couple minutes. After I got things under control, I asked her what she would have done if I hadn’t been right there when she had fallen. She said, “Surrendered to God…”

“No, wrong answer! Push the blamed button!”

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As I look back, the responses to my blog posts have run the gamut from extremely complimentary to borderline repulsive. However I can say, without hesitation, that the most common type of response could be summed up in the statement, “What… You too?” Despite the many modes and opportunities for communication we have at our disposal, we still can feel surprised when we encounter someone with whom we share experiences and feelings.

Sometimes this surprise results from unchallenged stereotypes. As a rather benign example, I can’t tell you how many times people have been taken aback by the fact that I enjoy knitting. But the fact of the matter is that in many cultures, it was historically common for men to knit because it uses many of the same skills that were needed to create and mend fishing nets. Besides, I find it utilitarian, relaxing, and even meditative.

Sometimes we are surprised by a shared appreciation of something. For instance: “Wow! You like lutefisk, me too!” Actually, that’s a bad example. Nobody likes lutefisk. You just eat it because you are Norwegian or Swedish – or a polite out-of-town visitor at a Lutheran potluck dinner.

But more ominously, the surprise sometimes derives from a feeling of isolation that leads us to believe that we are the only person in the entire history of humankind to have ever felt so sad, or so troubled, or so hopeless. Of course when you say it that way, it can sound a bit silly, but it’s not. When we are feeling isolated and alone, we have no point of reference to tell us that our current feelings are to be expected, and so are, in fact, rather common.

But that begs the question first posed above: How, in the face of all the communications options we have today, does someone end up feeling so isolated? Well, it’s not about technology, that’s for sure.

Long before the advent of Facebook, the World Wide Web, the internet, television, telephone or even the telegraph, personal isolation was a problem. The image of the loner isolated in the midst of a vast sea of humanity was a well-known theme the world over, and had been for a very long time. And to be fair, the world has, over the centuries, benefited greatly from such people. Whether you’re talking about authors, philosophers, painters, musicians, or anchorites, some of the greatest minds in history were loners.

But that image isn’t really the one I’m talking about. For those people, the solitary lifestyle they choose (or in some cases, perhaps, chooses them) was not about isolation. Rather, withdrawing from society was, for them, a tool that allowed them to be united with something larger than themselves: their art, their muse, or their God.

No, what I’m talking about is an isolation born of despair. The image I’m talking about is this one:

This painting by Edgar Degas and is titled L’absinthe or The Absinthe Drinker. Degas created the painting between 1875 and 1876, and it shows the interior of a cafe that still exists in Paris, La Nouvelle Athènes. Located a stone’s throw from a busy boulevard and, at the time, a gathering place for artists and young philosophers, the cafe and the street outside it were, no doubt, filled with happy, bustling throngs. This was, after all, Paris: the so-called “City of Lights.”

Yet all we see in the picture is darkness and isolation. The woman, apparently unaffected by the lights and crowds, is isolated from everyone – even from a male companion to her left. So she simply stares down into her drink or perhaps into the abyss.

Now, a hard question: Did any of you have a flash of recognition, like I did, looking into the woman’s face? A moment of, “What… You too?” If so, take a moment and then we’ll continue.

It would be hard to overstate the upset and anger that this painting caused when it was first shown publicly. It was called vile, disgusting, even obscene – and that was from Degas’ fans. One art critic was so repulsed and outspoken, that he later had to publicly apologize for a verbal outburst in which he referred to the woman as, “a whore.”

The point is that back then, as now, people didn’t like to look too deeply into the pain that lies in the hearts of others. Of course, we don’t know what brought the woman to this state, but does it really matter? Despair and isolation, regardless of the cause, are the same across cultures, and as we can see, across the centuries, as well.

Consequently, readers of the two or three dozen support forums I follow probably have little trouble recognizing both the feeling expressed in that face or identifying its many causes. For example:

  • Maybe you are someone who has just gotten a fatal diagnosis.
  • Maybe you are a new caregiver that has just seen your future disappear in a puff of purple smoke.
  • Maybe you are an experienced caregiver that has just been reminded of how profoundly out of balance your life has become.
  • Maybe you are wrestling with the fact that there is no one in your life that really understands you.
  • …and so on, and so on.

There is no end to the reasons…

So given all this familiarity, what is the solution? Before we can answer that question, we need to come to an understanding of the word, “solution.” There are pharmaceutical solutions, psychiatric solutions, religious solutions, and spiritual/esoteric solutions. Likewise, some solutions address root causes, while others simply help you survive until a long-term solution becomes apparent. In the right context, they can all be helpful.

But one that I particularly want to recommend could be called, “Ink Therapy.” Given recent history here in the US, I guess I should make it clear that I’m not telling you to ingest it, snort it, or take it intravenously. Rather, you want to use the ink for writing. Think about it, if the fundamental cause of “that face” is a feeling of isolation, the most direct attack on the problem is to refuse to be isolated. A couple weeks ago, I told you about my Uncle John who had the habit of just walking up to people on the street and introducing himself. In the context of the support groups that you follow, I’m suggesting that you do the same thing.

If all you’ve ever done is lurk in the shadows around the edges of our virtual campfire, go to your forums, click on the field that asks, “What’s on your mind?” and introduce yourself. Tell us who you are and what is going on in your life. Tell us your story – the end of which, by the way, you can’t yet see.

While it might seem obvious that your story is important to you, it’s probably not so obvious that it can be just as important to someone else. I have learned that there is one type of question on the forums that is almost always answered in the affirmative. I’m talking about the ones that start with the phrase, “Is it normal for…” The truth is, it doesn’t matter what symptom you describe to finish that sentence: 99.99% of the time, someone else will have experienced the same thing. So, yeah, it’s normal.

Talking, writing, communicating multiply your opportunities for “What… You too?” moments. And while those moments may not make your burden any lighter, they will nevertheless make them easier to carry because you know you aren’t really alone. Indeed, many other people have trodden the same path you are on now – and have come out the other side.

So two closing points:

First, don’t worry about whether your story is great literature – it doesn’t have to be. It just has to be real and authentic for where you are right now. Also don’t worry if your message evolves over time. One of the epiphanies I have had in going back and turning these posts into a book is that I am not the same panicked man I was last October – not to say that I don’t sometimes still panic. But I have grown, because any kind of writing (even just a short note) can be a journey of self discovery.

Second, don’t start your posts with, “Sorry, that this is a long post, but…” Nobody is handing out extra “brownie” points for being pithy. You matter. Your story matters. Just tell it.

In Christ, Amen ☩

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A prayer for when you are despairing…

“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 involvement in our lives. But today I want to bless You especially for Your intimacy with, and closeness to my heart. There are many times that I feel so broken and alone that I just want to sit and stop feeling anything. Thank you for being with me in those dark times. Thank you for surrounding me with Your children to reassure me. Take me by the hand and lead me back to hope. Give me the courage to keep reaching out. Amen.”

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Doing the Right Thing

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…

Got Janet outside a bit this week. She had to get her blood test redone for her thyroid meds. As it turns out, she has lost enough weight (she’s now down to 103 lbs) that her PCP has decided to reduce her dose from 60mg down to 30mg. By the way, for her thyroid she takes a natural product called Armour Thyroid.

“Oh Armour, you mean like the meat packing company?”

Yes, exactly like the meat packing company. The medication consists of desiccated and prepared porcine (pig) thyroid glands. The more common alternative is the synthetic hormone levothyroxine (often sold under the brand name Synthroid). Unfortunately, this synthetic hormone works slightly differently and Janet does not tolerate it well. Over the years we have had to do a lot to maintain her supply. At one point, the government tried to shut down production of the prepared tablets by issuing a total recall for unknown reasons. In response, we had to go to a “compounding pharmacy” that would buy the medication in bulk from the manufacturer and make up capsules for Janet to take. Of course, that source wasn’t covered by our insurance…

But back to this week. It did Janet a world of good for her to get out. After getting the blood draw done, we had a bit of shopping to do, and although all she did was sit in the car, it was like a tonic for her. She was able to see people and feel the warmth of the sun on her face. Sometimes doing things that make you feel healthy are more important than blindly conforming to someone else’s vision of what it means to be “safe.”

Unfortunately, that euphoria didn’t last and a couple days later I almost had to bring her to the hospital due to suicidal ideation. We now have two security cameras (with motion detection) watching her, and she has a new medical alert bracelet so she can call for help – and all the sharp silverware and cutlery is up, out of her reach.

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This week, I have been thinking a lot about an oft-told myth that to avoid trouble with others all it takes is do what is right and tell the truth. Thanks to the drama being played out every night on the evening news, we can see how tragically wrong-headed that idea is. Telling the truth is just as likely to get you stoned as it is to get you praised. And a big reason for this tragedy is that the standard of public discourse today seems to be, increasingly, questions in the form of the old joke:

“So, are you still beating your wife?”

In other words, before you have even opened your mouth, the inquisitor (and I use that word deliberately) has already decided you are guilty. The only matter left to determine is, of what?

Now, it’s one thing if all you have at stake is your personal comfort, livelihood, or freedom. But what happens if you are a caregiver for someone who is dependent upon you? In that situation, things get a lot more complicated. For example, you can’t simply say, “…go along, to get along…” because “getting along” might mean doing or submitting to something that is harmful to the one(s) for whom you are caring. However, if you resist too much and end up in jail for your “crimes” – like a father who was recently arrested for playing catch with his daughter in an empty park – who takes care of your loved one then?

If you are feeling confused and hopeless right now, know that those feelings are by design. You are experiencing exactly what many in power today (as well as the would-be power-brokers) want you to feel. Their goal is to fill your mind with so much doubt and fear that you are willing to be led by anyone proclaiming that they can see the way out of our current troubles. Of course, the problem with these “solutions” is that the people handing them out only provide advice that is going to benefit themselves, with the result that you, your loved one, and your real needs are left twisting in the wind.

Today, there are people offering solutions from a mad variety of political, sociological, and religious positions. However, the choice between them often boils down to who can give out the most “goodies” – and it matters little whether the advisor is offering money, power, enlightenment, or Heaven. Rarely, if ever, do we hear the argument made about which of these myriad of options is true.

In the past, there was a method for identifying what was true that revolved around a “marketplace of ideas.” The concept was that if people openly and honestly discussed questions, the truth would win out because it would be the only answer that satisfied reality. But for this competition of ideas to reach the desired goal, there are two obvious prerequisites: First, as the English poet and philosopher John Milton stated, there must be a “free, transparent public discourse.” Second, the participants in the discourse have to agree that there is such a thing as truth.

Unfortunately, today we fail on both counts. Increasingly, manipulators are either making certain ideas unacceptable by fiat at the outset, or are redefining phrases to make the accurate expression of certain ideas impossible. For example, you can’t have a serious discourse about “equality” if the person you are talking with has redefined the term as a racist “code word.” In either case, the goal is to control and regulate discourse so that only certain ideas can be expressed – and no dissent is allowed.

Likewise, if the manipulators are going to control the discourse, they can’t allow themselves to be embarrassed when one of their ideas bumps into reality. So they simultaneously give everyone the power to define what is real for themselves in the form of a personal reality that can’t be questioned.

Consequently, when all is said and done, the once-vaunted marketplace of ideas has become little more than a philosophical smorgasbord from which one can pick and choose any concept that strikes their fancy:

“Yes waiter, I would like the Existentialist Blue Plate Special with a small order of Religiosity on the side. Oh but hold the Libertarianism, it gives me gas…”

And if you happen to believe two contradictory ideas, no problem. What’s a little cognitive dissonance between friends?

Now if life is going along pretty well, you might be able to get by with this sort of intellectual dishonesty. But if you are suffering from a chronic disease, or are caring for someone who is, you don’t have time for such mind games. If, as in my case, your wife is dying, that is a hard, uncompromising reality that demands attention. And it matters not a whit whether you agree with the diagnosis. CAG counts trump opinions. It is an example of what I call True truth and a firm grasp of this truth is one of the things that you need in order to deal with the situation I outlined above.

The second thing you need is confidence that you aren’t in this struggle alone, but this conversation needs to be bigger than just how to obtain effective protection from the, “…slings and arrows of outrageous fortune.” Rather we need to see all our actions in the world as part of a process in which we are just one part. (For extra credit this week, contemplate the phrase that I didn’t include in that last sentence. I didn’t say, “small part.”) But if I am just a part, who is orchestrating the whole? I would assert it is The One whose very being defines the fundamentally True truth that is the basis for the reality in which we live. Here are three aspects of the support that we can expect:

First, God has redeemed my past. Unlike the opinion commonly expressed by the mob, I don’t have to be the result of an immaculate conception. In fact, God has a habit of using people with “a past,” as folks used to say. While the perfect, sinless people that are so common today would be tearing down their statues, God says, “That’s okay. We can fix that flaw and We’ll turn it into something beautiful.” Note that in the end, the resulting life is not as it was before – it’s better.

Second, to complete the work of redemption, God is walking with me in the present. And yes, it often isn’t pretty, but we can be confident that it will all work out because, unlike me, God is totally committed to the perfect end result. Consequently, whatever you or your loved one must endure in order to do what is right, it will move you towards the ultimate goal.

Third, God is going before me into the future. It may seem unfortunate, but the simple fact is that you and I can’t see even one second into the future with absolute certainty. As a result, we are often taken by surprise by what happens next. However, for God, all of human history is like a vast tableau that He organizes and structures for our benefit. However, this Divine Work isn’t like a movie I saw once where Greek gods were playing chess with people’s lives. God is not sitting uninvolved is some far-off heaven. Remember, He is “Emmanuel,” God with us.

So, in the end, we see that while the proper course of action may not be easy, it is really very, very simple. Truth matters. Right matters. So tell the truth and do the right thing.

In Christ, Amen ☩

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A prayer for when you are feeling confused and hopeless…

“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 certainty of who You are. But today I want to bless You especially for not being silent in the world today. Thank you for going before me, walking with me, and protecting me. Amen”

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Building a Team

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 word for this week is “fading,” because that is what has been happening to Janet. Her speech is growing even softer and less distinct, and in general she is more withdrawn. On the other hand, there have been a few positives along the way. For example, she has agreed to start taking a medicine that the doctor prescribed several weeks ago, but then refused to take. (I mentioned it in an earlier post.) So far, she seems to be tolerating it well and it is definitely helping with her chorea.

Thanks to the new meds, she is sleeping more, and seems (finally) to understand that she can’t just get up and walk around the house whenever she wants. The other night she went to bed much earlier than normal. About 0 dark 30 I went down to get a drink of water and found her sitting on the toilet, unable to get up on her own. God only knows how long she had been there. She hadn’t used her walker, so she didn’t have her phone with her, and she couldn’t call for help. A large chunk of the problem is that the last time she fell she bruised a rib, and transitioning from one position to another is painful for her. In any case, I have a medical alert system ordered and I’m waiting for it to come in.

She is also craving human contact beyond just Frannie and me. Unfortunately, everyone is so anxious to “protect” her…

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It’s common for caregivers to feel like they are all alone, like a frontier explorer. However, the situation is seldom so bleak – or at least it doesn’t have to be. The other day I saw a post online:

I have read that, “It takes a village to raise a child.”
So I was wondering: Do they just show up, or is there somebody that I need to call?

In the same way, caring for a loved one suffering from dementia is definitely a “team sport.” Sometimes people just show up in your life and sometimes it takes a bit of team building. However, before we get into that topic too far, there is one more thing we need to consider: how “attractive” it can seem at times to be a lone wolf.

The truth is, sometimes people have a hard time letting go and asking for help. Although this condition may be more common among men, I have read stories of both husbands and wives resisting letting someone else do “their job.” One big place where this feeling can arise is when it becomes clear that the loved one they are caring for needs to make the move into a full time nursing facility. I have heard people say things like they feel they are “deserting” their spouse, or letting them down, or breaking a promise.

First, I would say to the caregivers that you are not deserting anyone, or letting them down, or breaking a promise to them – or for that matter, to God either. At some time or another, if your loved one lives long enough they will reach a point where you can no longer care for them. I’m so sorry, but that is just the truth. And when that point comes, your job will shift (but only slightly) from caring for them, to making sure that they have the care they need. One type of advocacy is as important as the other.

Second, if you are reading these words as the one who is being cared for, please start a conversation with your caregiver now, today. Let them know that you realize that someday you will reach a point where they can no longer care for you. Then together, figure out what they are to do when that time comes. Don’t forget to let them know that, whatever may come in the future and no matter what some “future version” of you may say, you trust them and believe in them. Unfortunately, Janet and I didn’t do that and it has made things so very much harder. Please. Learn from our mistake.

So back to team building…

I suppose the first thing to consider is what is a “team” anyway? Obviously, it is a group of people, but more to the point, a team is a group aligned on the same goal. But even more than that, the goal needs to be the right one. Once in a job interview, I was asked if I was a “team-player” and I said, “Depends. Is the team running towards the right set of goalposts?” While there is undoubtedly a lot of bad news in the world of chronic illness, there is one bit of good news: the goalposts are clearly marked.

At one end of the field is a set of goalposts bearing a beautiful banner emblazoned in gold with words proclaiming the intent to provide the best care possible physically, emotionally, and spiritually. At the other end of the field is a goal festooned with a bedraggled, dirty rag bearing a few scrawled words announcing the intent to do just the minimum to “get by.” If you are running towards the first goal, please keep reading, but if the second goal looks attractive, feel free to leave at any time. I am sure that upon reflection, you will see that you have already done far more than is absolutely needed. Of course there is that whole “Do unto others…” trope; as well as the very real possibility that you might, in your old age, fall into the clutches of someone who believes like you do now. But suit yourself…

Under ideal circumstances, the first group of people that we should always be able to count on is family. But we all know, or have heard, of situations where family didn’t always “come through.” In scripture we see hints that perhaps even Jesus had to deal with this issue. But the concept of family transcends mere biology or DNA. As we have talked about before, there is also the family that God creates for you out of whole cloth. These relationships can form anywhere communication is possible – even online. But if family is built on communication, someone needs to extend the first hand. In my family, they used to tell the story of a great-uncle of mine who if he saw someone on the street that struck him as a person he thought he might like to know, would walk up to them, stick out his hand and introduce himself saying, “The name’s Pennington, what’s yourn?”

The second source of team members is, obviously, where you worship. Whether you call your worship space a cathedral, church, temple, synagogue, shul or elementary school gymnasium, the people you find there are an invaluable resource. They may not be experts in the disease or condition you are battling, but can offer other things. Going back to Jesus and His disciples, we don’t really know a lot about them, but if Jesus followed the pattern of other itinerant rabbis of the time they would have been young. Peter was probably the oldest being married, so maybe 18, but the rest? Again, following tradition, most likely between 15 and 17 years old. Not exactly the group that you or I would pick to change the world. But nonetheless, they did it. In the same way, those whom God has called to be around you can help change your world too.

Finally, let’s consider the medical members of your team. For the most part, Janet and I have been extremely blessed. I have described Dr Cotugno in Pennsylvania (who figured out Janet’s diagnosis) as basically a bulldog in a white lab coat. He knew that it wasn’t just in her head, but that there was something wrong with Janet. But more to the point, he wasn’t prepared to rest until he found out what it was – that’s where the bulldog comes in. He was going to find out what was happening.

Then there was Dr Kostyk in Ohio. Knowing that we were “new” to the situation, she went far beyond simply examining and treating. She also spent a lot of time with us explaining and educating.

Finally, what can I say about the crew at the HDSA Center of Excellence at UT in Houston? Their attitude is that although Janet may be the only one carrying the gene, HD is nevertheless a family disease. I’ll never forget our intake appointment with Dr Erin Furr-Stimming. She sat with us for hours talking about everything. We discussed symptoms, family dynamics, medication, the future, everything. The thing they brought to the party was not just medical expertise, but also a lot of heart.

So there you have it. Hopefully by now you should see that there is a great team out there, and they’re waiting for you to find them.

In Christ, Amen ☩

PS: Just a quick note in closing. I have heard from a number of you that you would like to be able to get a compilation of my writing in book form. I am still working out the details, but God willing, that is going to happen this year. It will be available in soft- and hardcover, as well as an eBook. I’ll keep you posted.

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A prayer for when you need a team…

“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 lessons that you teach. But today I want to bless you especially for demonstrating the importance of teams – even Jesus had His disciples. So open my eyes to see the team that surrounds me, and open my heart to enthusiastically join teams that need me. Amen”

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What is the Point, Really?

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 Janet fell again – twice. According to her, she is totally wheelchair bound because she can no longer use her walker. Okay, fine. Except her solution is to not stay in the wheelchair and call Frannie or I when she needs help. Oh no, her solution is to try and walk where she wants to go without the walker! In her mind, the walker no longer works for her, so she just stops trying to use it. In fact, according to her, the walker is why she fell the last time. She said that she tripped over it. Unfortunately, she fell in the hallway and the walker was in the living room, two rooms away!

This whole situation really worries Frannie because she has a friend whose mom fell, broke her hip, and died in the hospital. Consequently, Frannie is scared – and not without reason. With the current panic about this virus, if Janet does fall and has to be taken to the hospital by an ambulance, Frannie might not get the chance to ever see Mom again, dead or alive.

So for now, Frannie and I will watch Janet more closely and try to keep her in her chair.

This week I have also been revisiting the topic of retirement – and unfortunately my own words have been coming back to haunt me. Many years ago, when our son was in Boy Scouts, I taught a financial planning merit badge class. During that class, we discussed looking for their life’s work. A point that I made was to always start the search from what you enjoy doing. My reasoning was (and is) that we are all here to fill a particular niche in the world, and because God loves us, He will put into our hearts a love for doing whatever it is we are here to do.

One of the boys asked, “But Mr. Porter, what if you can’t earn a living doing what you love doing?” In response I said, “Look, if a bunch of good ‘ol boys from down south that loved to fish can figure out a way to spend all their time fishing – and get paid to do it – you’ll figure something out!”

Those words were so easy to say, but how to put them into action? Now I am the one trying to figure out my future. To wit, how do I maximize my time at home taking care of Janet, while doing what I love (writing)?

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I feel I should start off by apologizing ahead of time in case the following conversation devolves into an emotional rant. This week it seems like I have been inundated with absurdist comments – or at least comments that from the Christian perspective, are rather absurdist. What makes matters worse is that some of the comments are coming from ostensibly Christian organizations. Consequently, I feel particularly uncomfortable with the direction in which things seem to be going.

Before the pan(icked)demic took hold, caregivers were under-appreciated and overwhelmed – but at least there was no hostility towards us. Over the past few months it feels like things have changed. It’s like people have turned off their brains and are all reading off the same script. I’ve been asked, “Don’t you care? You could bring the virus home and your wife could die.”

Sometimes, I feel like tapping them in the middle of the forehead with my forefinger (really hard) and yelling, “Hello? Anybody home? She has HD, she IS dying.” Sometimes, I feel judged by people who have no idea what is going on with Janet and seem unwilling or unable to grasp the implications of her disease. Looking back, I realize that there is only one thing that has remained constant in the time since Christmas: Janet is tired and wants to go home to be with God. Every day is painful for her, every day is torture as she feels herself melting away, and like an injured animal she just wants to curl up and hide. Who knows? Maybe those feelings are the root cause behind some of the behaviors that seems so willfully self-destructive.

Of course in the grand scheme of things, HD, with its 30,000 diagnosed cases, is not really very significant. But there are many other terminal diseases. At least people dying from cancer (like Lewis’ wife, Joy) can know and understand what is happening. However, do you have any idea how many different diseases can cause dementia? Those poor souls don’t know and can’t understand what is happening, so they die alone, deserted and isolated from everything that is familiar. Who of us can relate to that level of despondency?

However none of those facts matter in the slightest to the people with the scripts. They just read from the carefully typed-out and focus-group-tested talking points and no deviation is to be tolerated! Conform or be publicly shamed.

And then there are those who try to make it sound like they are concerned for you and your welfare. Admittedly I am old, but I can remember when the predominant feeling was that you deal with what life hands you, and just keep moving forward as best you can with God’s help. Now it seems like everywhere I turn there is someone telling me to just, “…say a quick prayer, and move on…”. The point of that particular post from a “Christian” organization, was that if you dwell on someone else’s problems it will drain you emotionally. I’m not saying that helping others doesn’t drain you emotionally, because we all know that it does, but their post was saying that we should use that effect as an excuse to not be involved in the lives of others – which is clearly wrong.

I once saw a cartoon where a lawyer was reading the will of a wealthy man to the “grieving” relatives who were presumably waiting to get their cut of the inheritance. The will started: “I John Smith, being of sound mind, spent it all before I died…” A real-world example of a similar attitude was Andrew Carnegie. While he accumulated unimaginable wealth as a young man, in later life, he started systematically giving away his vast fortune, to the extent that by the time he died he had little money left. And what did he use his money to build? Colleges, universities, but mostly libraries! I don’t know about you, but I grew up going to a Carnegie Library. Later, I was surprised to learn that there were actually libraries in the United States that he didn’t build. You see, in small town America, the words “Carnegie” and “Library” just went together.

That is sort of how I see things spiritually. I have been blessed with certain resources and, as in the parable of the talents, those resources are to be used. When those resources are used well, there is gain. But remember the words to the servant that just sat on his gift and hoarded it – he was called “wicked” and “lazy.” In sports, they use slightly different imagery. They say that if you have anything left when you get back to the locker room, you didn’t play hard enough. At the end of the day, that is what I want for myself: I want to be able to say that I “left it all on the field” – and if that makes me look irrational in the eyes of some, so be it.

In Christ, Amen ☩

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A prayer for when you are feeling tired and irritated…

“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 consolation you provide. But today I want to bless you especially for the gifts and resources that You furnish to Your children. You always send me out into the battle well-prepared. Thank you for always giving me what I need, even when I don’t realize I need it. Amen”

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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”