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For the Men Folk

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 stopped eating. As I write this, Frannie and I have been able to get her to eat some soup from an Italian restaurant, but there were days when she didn’t eat at all. Her weight is below 100 lbs. How long can someone with such a low body weigh last with no – or at very little – food?

Janet and her Dad
This picture is of Janet on our wedding day with her father (from whom she inherited the gene). I have always loved this picture because it shows the little “derby” that went with her tulle veil – though to me it always looked more like a small white cowboy hat.

Janet has started taking naps in the middle of the day; in fact, she’s sleeping almost non-stop now. Friday morning we had a meeting with a hospice nurse, and she has been accepted back into home hospice, so we will be receiving visits from a home health aide three times a week. Later that day we took delivery on her hospital bed (which she loves) and some other miscellaneous equipment.

The only remaining question is how long will she be needing them?

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When I first started coming to the support forums, the first thing I noticed was that the demographic of the participants was overwhelmingly female. To me this fact was curious because I knew that HD affects men and women in equal numbers. Therefore, it seemed logical that there should be about equal numbers of male and female participants on the forums.

At Janet’s next HD appointment, I talked to the clinic’s social worker and related my observation. Her reaction was, “Oh yes, they have done studies and it’s a real thing. Male caregivers rarely reach out for support, and male patients with no woman (wife, daughter, etc) caring for them also don’t get the support they need.”

Ok, but is that observation accurate? Well, as they used to say back in the 60’s, “It’s a mixed bag.” On a gross level, my feeling about numbers was pretty close. An organization called the National Family Caregivers Association did a study a few years ago across all chronic conditions and determined that in the US there are about 54 million people who are serving as primary caregivers for a family member. Of that number 44% – or just shy of 24 million – are men.

But therein lies a problem. If the social worker is right that men just aren’t getting the support they need, guys should be dropping like flies, but statistically speaking, we just don’t see that happening. So it would seem that we men are getting the support we need, but it looks different. That realization, in turn, got me wondering: what other things do men do differently in a caregiving situation?

But before we go any further, I need to issue a couple warnings:

  1. Generalizations: There are a lot of them coming up. The point is not to try to force people into boxes with roles to fulfil. Rather, learning about generalized behavior can be a path to self discovery because, even if the fit isn’t perfect, it can nevertheless give you insight into how you behave and react.
  2. Exceptions: Yes, there are always exceptions. This point sort of goes with the previous one about generalizations. People are not stereotypes, so if you don’t fit the mold: Good for you! Celebrate the parts of you that don’t fit the pattern. Often I find that those “ill-fitting” bits are actually gifts that make me better suited for what I need to do.

So starting with the question of where do guys get support, we need to recognize that “support” can look very different for men.

To begin with, it is a well-recognized fact that men are not “joiners” – meaning that associations outside their inner circle of family and friends tend to be transient. In discussing this tendency, psychologists often like to think in “evolutionary terms” and so will wax philosophical about wandering bands of nomadic hunters meeting by chance on the vast Serengeti plain and agreeing to temporarily work together to bring down a mammoth, giant sloth or something.

For me, though, it matters little whether this trait was “evolved” into men, or as I feel is far more likely, consciously put there by our Creator. The point is that the support structures for men clearly tend to be less formal and more ad-hoc. Consequently, it is reasonable to have fewer men willing to “sign up” for a support group, and for fewer still to actively participate.

But, if support doesn’t occur in formal groups, where does it happen? Sometimes in a tree stand when there doesn’t appear to be a deer in 100 miles of you. Sometimes support occurs in a boat in the middle of a lake, when nothing is biting. And sometimes it happens during a lull in an oil change, or over a beer while you’re enjoying the pleasant coolness of dusk and watching the sun go down.

While, there will be those that will complain that the last paragraph was written from a rural North American (i.e. red-neck) perspective, the point is that support happens in unpredictable and unplanned ways. Support can also occur at work, in a pub or cafe, or riding on a commuter train.

Next, it should be noted that, paradoxically, many men will only argue with close friends. Why? First, it’s because the only opinions that most guys really care about are those of their friends. Why get into an argument with someone who’s opinions you don’t respect?

Please note that in making this statement I am drawing a distinction between having an argument (or making an argument), and just yelling at someone. It’s the difference between having a “meaningful dialogue” and “sending a message” – a thoroughly offensive cliché, by the way. For completeness sake, I should point out that there is also something called expository speech where someone is trying to convince someone of something. In this framework, expository speech falls somewhere between arguing and yelling at people – exactly where it falls, depends upon the topic and the speaker!

Secondly, men argue with friends because it is safe to do so. With a friend you can disagree and shout and yell, but you never have to worry about losing that which is really important: your friendship. This point is so important because the best conversations occur when personalities, identities and ego aren’t involved.

Therefore, among men, expressions of friendship can be more (How shall I say this?) “abrasive.” For example, once while I was in the Air Force we once flew into an Italian Air Force Base outside of Pisa. Two local civilians came out to service our plane and got into a disagreement with each other about something. Soon they were toe-to-toe screaming at each other and gesticulating wildly. Concerned, I asked another one of the other ground crew whether we should do something.

“No,” he said, “they’re brothers-in-law. They always yell at each other. They’ll be fine.”

And they were, I saw them a hour or so later laughing and joking over beers.

In a similar vein, it should be remembered that it was men who invented “snipe hunting” and many similar “bonding” exercises…

There are also differences in the way men approach challenges, in that we are problem solvers. We like to approach challenges logically and dispassionately because it is built into our DNA to react in that way. For us our #1 goal is to, “work the problem.” Hence, we try to shut out everything that isn’t part of the solution – including emotion.

So you see, it’s not that we don’t care, but rather it is precisely because we care very deeply that we appear to shut down emotionally. Perhaps this is the reason that men are so good at handling crises. Of course the other side of that coin is that we try to bring that same level of intensity to the management of chronic situations, so we tend to burn out (a lot) faster.

So where do I fit into this puzzle? Well remember what I said above about “generalizations” and “exceptions?” When I was a kid we would go to visit my Mom’s family in Iowa (a little town named Morse, near Iowa City). At these family gatherings, the men folk would, depending upon the season, congregate in either the living room or on the front porch. They would talk about cars, tractors and the price of hogs and corn – all important things to know about if you live in Iowa.

But the women – my Mom, grandmother, and always a couple aunts or great aunts – would gather in the kitchen and talk about things that sparked my imagination. They would have wonderfully loud, joyous conversations. In some ways, fixing dinner was like a religious ceremony because everything meant something.

For example, there were the holy relics:
“That’s your great-great-grandmother’s roasting pan.”

And rubrics:
“Always stir cake batter to the right and never reverse directions – it will spoil the cake.”

History lessons:
“Did you know, when I first started teaching, teachers weren’t allowed to be married?”

And applications for daily living:
“Don’t use all the buttermilk! Pappy will want some to sop his cornbread in after dinner.”

The bottom line is that dinner wasn’t just about food, it was about telling and retelling for the millionth time the story of who were. So I guess while I unabashedly exhibit many of the male traits mentioned above, thanks to the strong women that were around me as I grew, I have also come to wear my heart on my sleeve, at times rather more than what is comfortable.

Because I understand how remembered stories and traditions can hold us together when times are hard, I may someday share some of those stories. I may write about my grandmother who was a teacher in a one-room schoolhouse, and often said that the main thing you learned in a one-room school was how to be a good citizen. Or I might talk about her sister, my Aunty Butch (pronounced to rhyme with “hutch” or “crutch”) who gave up the chance of having children of her own to protect her best friend’s children from an abusive father.

We’ll see…

Finally, we need to understand that culturally, men are horribly ill-prepared for the role that they find themselves in when caring for a dying spouse. Think about it for a minute, little boys and little girls get dramatically different messages growing up. Little girls growing up see, modeled in the lives of perhaps their mother, but certainly their grandmothers, and ladies that they know socially, the truth that someday their husband will die and they will be alone again.

This fact is borne out by insurance actuarial tables, and even government statistics. The US Census Bureau has pegged life expectancy in the US at 77.1 years for men, and 81.9 years for women. While that knowledge certainly doesn’t make it any easier for women, when their spouse dies, they at least have role-models in whose footsteps they can follow.

But now think about little boys and the message that they get growing up. They witness the same world, and read the same statistics but have a very different reaction. I have to be honest, when Janet and I got married I didn’t hear the pastor say, “Till death do you part…”. What I heard the pastor say was, “You are going to be married to this beautiful woman for the rest of your life.” I mean, that’s the way the world works right? There’s a law about that or something … isn’t there?

For me, this point is getting to be very, very real. As I stated earlier, Janet is eating less and less, and sleeping more and more. What’s more, I know how this movie ends: one day I’ll go downstairs and she won’t wake up. Then what? The only widower that I knew personally was a great-uncle who started trying to act like a teenager again – it was embarrassing.

When our spouses die, men don’t usually have the benefit of reassuring role models to fall back on. Yet even in that dark time, we aren’t ever really alone. Even when the world seems upside-down and tilted off-center, even then we worship Emmanuel – God With Us.

In Christ, Amen ☩

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A prayer for when you are wrestling with what happens next…

“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 foreknowing wisdom. But today I want to bless You especially for the certainty that I can have that, even without role models, everything will work out as it should. Amen.”

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Mirages

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 is continuing to eat less and less. This week on Facebook, a memory picture came up of Janet back when we could go out to eat. At the time of the picture, we had gone out to a Cajun restaurant here in Houston and she probably weighed 185 lbs., or thereabouts. Now she weighs 100 lbs., give or take a bit.

Lately I have been thinking about the past and our life together – a lot. For instance, I have been remembering when she was pregnant with our son (our first child) and we were trying to spruce up the house that we owned in Norwood, Massachusetts. It was during that effort that we learned the “joys” of such things as removing horsehair plaster and working with turn-of-the-century electrical systems.

It was also during that remodeling effort that Janet got it into her head that what the house really needed was a fresh coat of paint.

Now the thing to understand is that while the house itself was only two stories high, due to the way the land sloped and the way the basement was laid out, the second floor in front was actually nearly three stories off the ground.

So we bought the paint, a spray gun, a ladder and all the other miscellanea that one needs when one is going to paint a house. After we got all the stuff home, I discovered that Janet expected that SHE was going to paint the house. When I tried to point out (quite reasonably, I thought) that she was eight months pregnant and shouldn’t be climbing up and down ladders, she pointed out that I needed to mind my own business. After all, she had painted a house before – even if that house was a single-story bungalow.

In the end (I thought) we agreed that she was not to be climbing up and down ladders. Moreover we would get professional painters to handle the eaves of the second floor, which were a full three (scary) stories off the ground.

But 2 days later, I got home from work and there was my very pregnant wife painting the second story eaves. Never did figure out how she got the ladder up that far…

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A basic truism today is that much of society is consumed with the issue of identity. And like so many things, people today have paradoxically redefined the word. Rather than meaning who you are personally, it is seen as a way of indicating what group you belong to. Don’t get me started on that degenerative practice!

But even when the word is used properly, it’s crazy some of the ways in which people choose to identify themselves. For example, when growing up I had an aunt who took great pride in identifying herself as a [blank] of the Rockford Illinois, [blank]s. I guess we were supposed to be impressed.

Then in the 60s and 70s, identity became something for which you had to search – often in exotic locales. In fact, it became something of a cliché for someone to say they were taking a trip or undertaking some other kind of experience in order to “find themselves …” Over time, as the baby boomers grew older and became more settled, the story evolved into one of a successful, but unhappy, person abandoning their comfortable life and taking up a quest to figure out “…who they really are…”

A popular subgenre of this type of story concerns a successful professional person who thinks that they have life pretty much figured out, but for some contrived reason, moves from the city to the country (or vice versa) and there discovers “…who they really are…” – often in tandem with a new love interest. Here in the US, there is an entire TV network (called The Hallmark Channel) dedicated to broadcasting seasonally-inspired versions of this story 24/7.

While a key part of all such modern fairy tales is the idea of making a clean break and starting over, reality has an unpleasant way of intruding. Even if you aren’t a successful professional, you can find yourself being forcibly evicted from your warm, safe, comfortable rut. When my wife first got sick, she did some counseling where she was advised to remember that, “You aren’t your disease.” And for a while, I guess that was true. But as time and the disease progressed, it became increasingly difficult to maintain that facade.

Moreover, it wasn’t just Janet that was going through changes. I was desperately trying to figure out where our life was going. Consequently, there were two identities in a constant state of flux, but what are the odds of two erratic lives staying connected the way they had been before?

In my own experience, as well as those of others, it is not uncommon to hear someone invoke or describe an “Alice in Wonderland” feeling. For instance, at one point, as Alice wanders about trying to find her way, she encounters a hookah-smoking caterpillar.

Alice and the Caterpillar
Alice and the Caterpillar

“Who are you?” said the Caterpillar.

This was not an encouraging opening for a conversation. Alice replied, rather shyly, “I – I hardly know, sir, just at present – at least I know who I was when I got up this morning, but I think I must have been changed several times since then.”

“What do you mean by that?” said the Caterpillar sternly. “Explain yourself!”

“I can’t explain myself, I’m afraid, sir,” said Alice, “because I’m not myself, you see.”

“I don’t see,” said the Caterpillar.

“I’m afraid I can’t put it more clearly,” Alice replied very politely, “for I can’t understand it myself to begin with; and being so many different sizes in a day is very confusing.”

Whether you are a patient or a caregiver, that is the haunting question – “Who are you?” – even as society imperiously demands that we explain ourselves. Moreover, we seem surrounded by things offering hope for our sad condition, each bearing helpful little tags reading, “Eat Me!” or “Drink Me!” Little wonder the 60’s drug culture fell in love with the book.

One pill makes you bigger,

One pill makes you small,

And the ones that mother gives you,

Don’t do anything at all.

Go ask Alice, when she’s 10 feet tall…

Jefferson Airplane (White Rabbit 1967)

Like Alice (and perhaps Grace Slick), we sometimes feel so big that we are the unwelcomed center of attention, while at other times we feel small, insignificant and ignored. And yes, being so many different sizes in a day is very confusing.

The basic problem is that we always define our identity, who we are, relative to something or someone else. My aunt derived her identity relative to her ancestors and their perceived social standing. People who went out trying to find themselves were searching for an identity based on novel experiences that were bigger than the familiar world they grew up in. The folks in the Hallmark Channel movies are simply exchanging an identity based in one set of professional and personal relationships for one based in a different set of professional and personal relationships.

But those relationships are the identity’s vulnerable spot. If something happens to the relationship, the identity or identities deriving from that relationship crumble. And what is there that isn’t susceptible to loss and decay? Marriages end in divorce or death, siblings are lost, children grow and move away for lives of their own, careers end, pets die, and organizations come and go – or change beyond recognition.

As far as the eye can see, everything around you, animate or inanimate, has a life span, a service life, an expiration date, a timeout, a proper season, or a shelf life.

So I might say, “Ok, if that’s the game – I choose not to play it!” Unfortunately that strategy doesn’t work either. Even if I eschew all contact with the world and become a hermit, I am still defining myself in relation to the world – in this case a world in which I don’t wish to participate. But that identity is as vulnerable as any other. Remember the classic children’s story Heidi? All it took was for a little girl to wander in and demonstrate that the world is not so terribly horrible and the grandfather’s identity as a curmudgeon is blown sky high.

So to recap, nothing around us is permanent and we can’t even “opt out” of the predicament. So is there no hope? Are we doomed to an endless cycle of traumatic relationship collapses and identity rebuilding exercises? No, there is good news to be had. The simple (though far from easy) solution is to base our identity on a relationship that is unshakable and indestructible to the point that it can survive anything – even death.

“But,” you might object, “didn’t you just say that everything around us is impermanent?”

Actually, what I said was, “As far as the eye can see…” Maybe we need to try looking where the eye can’t see.

“Sounds like we are back in ‘Wonderland.’”

Hardly. If you think back, last week we talked about the different reasons that people might have for running a race. One person ran as an expression of who he was as a human being. However that statement means more than simply identifying with a particular skill, which can obviously fade over time. For this runner, it meant that he ran because the skill was a gift that God had given him. Hence, he focused on God and giving Him pleasure by using that gift to the fullest extent possible. So while one gift might fade over time and be replaced with another, the runner’s identity remained untroubled and at peace because it was based on the identity of the Giver, the One who is never ending, and Who is constant.

There is our way forward: An identity that is based on God and His intent in creating us. As I have said many times in the past, whether you are the patient or caregiver, what you are experiencing is not random. There is a point to it all, and that point is to transform you into the being you were created to be.

By the way, as Moses (משה רבנו) discovered at the burning bush, God has a really good answer to the question “Who are you?” He simply said, “I am. I am the One who is.”

In Christ, Amen ☩

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A prayer for when you aren’t sure who you are…

“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 who You are. But today I want to bless You especially for also being the basis for the ultimate reality of who I am. Help me to discern the difference between who I am and the temporary labels that I get from the world. Amen.”

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What is Success?

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 seems to be going through cycles where one moment she wants to be left alone, but the next, she wants to be involved in conversations and decisions. In fact, Frannie is experiencing increasing upset over Janet’s “eavesdropping” on conversations and then trying to participate in them – even when it’s clear that she didn’t really understand what she heard. I seem to be back in the mode of getting between the two of them to prevent verbal altercations.

Another thing I have talked about in the past, that bothers Frannie greatly, is Janet’s refusal to use her walker. I have come to realize that short of tying her down, there really is no way, as a practical matter, to stop her from getting up and toddling around the apartment. It strikes me that perhaps refusing to use the walker is her last act of rebellion.

Come to think of it, that word pretty well sums up Janet’s life: “rebellion.” Whether spiritually, politically, educationally or any other way you can name, Janet has always seemed to have her BS detector (on a scale of 1 to 10) hardwired on 11. She has left churches over misbehavior of clergy. Over two election cycles, she worked tirelessly for Perot. Even in her current diminished cognitive state, she still talks about his prescience in seeing where previous administrations were taking the country.

I have written before about how, when she was teaching in public schools, she tailored lessons for individual students. But she also cared about the small stuff. For example, Janet is from Massachusetts and for those of you who have never been there, yes, they do talk funny. But Janet was always careful to model correct pronunciation. In fact, one of the ways I could tell she was ill was if, in response to the question, “How are you feeling?” she would say “mediocah” (mediocre).

But Janet was always a rebel with a cause. She never believed in tearing things down simply for the pleasure of seeing others fail. For her, there was always a reason for her rebellion: to make the world a better place.

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The post last week talked about what happens to caregivers after they have successfully completed their care mission, and how they can find fulfillment and meaning by contributing back to the community. However, whether you realized it or not, there was a rather glaring hole in that discussion, which I intend to close right now. The previous post just assumes that the caregiver’s work ended in success. However, in the context of caring for someone with a terminal illness where the patient always dies, what exactly does success mean?

  • Kept them safe.
  • Kept them alive as long as medically possible.
  • Gave them “Death with Dignity”.
  • Helped them to be happy.
  • Did the best I could.
  • Kept them out of a long-term care facility.
  • Got them admitted to a long-term care facility.
  • I outlived the person for whom I was caring.

But which, if any, of these goals forms a good basis for determining success or failure as a caregiver for someone with a terminal illness? Before we try to answer that specific query, let’s take a little broader perspective on the matter by considering a common metaphor: The foot race.

Over the centuries, the foot race has repeatedly proven itself as a way of explaining, exploring, and describing the meaning of success. For example, how many times have you heard someone describe caregiving as a “marathon” and not a “sprint?” How many times have you said something like that yourself?

The reason for this popularity should be obvious. Consider: a foot race has a clearly defined beginning (the starting pistol goes off), a predetermined length, a precise end (when the runner breaks the tape at the finish line), and a reward for winning, ranging from congratulatory handshakes and hugs, to formal awards such as this gold medal from the 1924 Summer Olympics in Paris, France. (Why the 1924 Paris Olympics? Patience, dear friends, patience.)

Gold Medal 1924 Paris Olympics
The problem, of course, is that the marathon a caregiver runs lacks nearly all of the things that make a race an attractive metaphor. For example, when did the cognitive problems definitively start? Maybe your loved one had been feeling the effects for decades before recognizing them. And predetermined length? Who are we kidding? They may survive for months, years or even decades. We talked about the lack of a definitive end last week.

Despite all these difficulties, race analogies can nevertheless be helpful by bringing with them a certain intuitive understanding of the situation. But this metaphor has much more to offer than mere vague generalizations. A point demonstrated by a wonderful movie I saw many years ago.

The year was 1981 and the Academy Award winner for best picture was a historical drama surrounding the eighth modern Olympiad, held in Paris in 1924. The movie is, of course, the magnificent Chariots of Fire. Focusing on the lives of Eric Liddell – the so-called “Flying Scotsman” – and Harold Abrahams, you soon discover through the film that in many ways, these two men could not have been more different. Given their differences, it would be tempting (and easy) to cast comparison between the two of them in terms of the good (Liddell) and bad (Abrahams), but the truth is far too complex for that simplistic of a structure.

For example, while it is true that Abrahams was at times arrogant, carrying a chip on his shoulder the size of Big Ben, those personality quirks were not without cause. After all, Abrahams was Jewish, and England at the time was rife with antisemitism. But there was more to the man than that. He also demonstrated the ability to love deeply, and had a reputation for being intensely loyal to friends, his teammates, and his country.

The really interesting difference between the two men is their reasons for running, why they raced. Liddell ran as an expression of who he was as a human being. As he once told his sister, “I believe God made me for a purpose, but he also made me fast! And when I run, I feel His pleasure.” Liddell raced because it gave him a reason to run and express who he was. A hallmark of the pleasure he felt was apparent in his unique running style. As can be seen in archival films from the time, when he crossed the finish line, his arms would be flailing, his head would be thrown back and his mouth would be gaping open in an impossibly wide smile – a smile.

By contrast, due to the daily reality he lived, Abrahams had a very different reason for racing. He once told a friend that his intent for the antisemitic mob was to “…run them into the ground!” Simply running a good race was not adequate: all that mattered to him was winning. He wanted to be able to rub their noses in his success. For him, there was no joy in running, only anger and revenge. But then something, we don’t know exactly what, changed him.

Perhaps it was the realization that winning an Olympic gold medal didn’t feel nearly as good as he thought it would, but instead left him feeling hollow inside. Maybe, as in the film, he witnessed Liddell win his gold medal event and saw on his face another reason to compete – the sheer joy of it. Conceivably, it was something that God worked out silently in the privacy of his heart. One thing is clear: if you read about his life after 1924 and all the things he did publicly and privately, he was a different person.

So what does all this talk have to do with being a successful caregiver? Simply this: I would humbly submit that there are two approaches to caregiving, that mirror the approaches these two men exhibited when racing. Moreover, I contend that we aren’t stuck in one modus operandi. Rather, people can and do change their approaches to the task of caregiving all the time – in other words, we have good days and we have bad days.

So the first approach is analogous to how a younger Abrahams approached running. Here the caregiver sees themselves as being embroiled in a battle, not against antisemitism or bigotry, but a disease. This approach does work, for a while at least. For example, Abrahams’ single-minded focus on winning at all costs, did get him to the Olympics, and it won him a gold medal. But it called for a level of isolated exertion that was ultimately unsustainable. Perhaps this is why so many caregivers die before the person they are caring for does: caregiving as a battle, in the long term, doesn’t work.

As I said before, the problem is that with our race, the beginning is uncertain, the duration is unknown and the end is unpredictable. So what we need is an approach that is more like the way Liddell ran a race. An approach that focuses less on what we are “doing” and more on who we “are.” With such an approach, success or failure isn’t judged at some arbitrary point in the future when the race is done. Rather, the goal is to express who you are and your giftedness right now, today, with every step.

What parent doesn’t find pleasure in seeing their child using and enjoying a special gift they gave them? Yet too often people of faith fail to recognize that God feels pleasure when we make full use of the gifts He has provided us. Like Liddell all those years ago, we can affirm that “…when I run (care/write/program/etc.), I feel His pleasure.” Moreover, we can learn that His pleasure isn’t just a nice feeling that lasts for a moment and then is gone. Rather, we can experience His pleasure as a sustaining force that enlivens us, strengthens us, and lifts us up on the wings of eagles.

Now that, my friends, is success.

In Christ, Amen ☩

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A prayer for when you are feeling spent…

“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 gifts that you bestow. But today I want to bless You especially for the strength that You give me for today. So often I feel run down and run over. Thank you for not just enabling me to survive trials, but to thrive in the face of adversity. Show me how to feel Your pleasure. Amen”

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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.”

Posted on

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.”