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Waiting on God

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 got back from her hospice respite time well-rested and well-cared-for, even if a bit confused. She didn’t understand who was picking her up, or where they were taking her. One thought was that they were picking her up to drive her to Heaven. But then she became convinced that she had been “kidnapped” by some shady operators from a political campaign, but she had forced them to bring her home instead.

While it might be tempting to snicker at or worry about these sorts of expressions, they actually show that her brain is still processing information and trying to do what human brains do best: make sense of the world – even when large chunks of information are missing or distorted.

Another example of the wonder of human consciousness is memory, and everyone knows that dementia means to forget. Nevertheless, there are exceptions. For some unknown reason, while the ability to retain short-term memory in general gradually disappears, something will occasionally “stick” and be retained.

A couple weeks ago when Janet was trying to figure out the logistics of how she was going to get to heaven, she asked me what dying would be like. In response, I told her it would be like drifting off to sleep, but when she woke up she would be looking into the face of Jesus. While that answered her question and put her mind at ease, it did create another issue: disappointment.

Every morning now, Janet opens her eyes, expecting to see Jesus, but instead beholds only me. Being understandably disappointed, she asks the one simple question that has been this week’s focus: “Why am I still here?”

Before continuing, I also want to acknowledge the CNA that the home hospice agency we are working with has assigned us. Latonya is a wonder, always kind and professional, but also playful and friendly. For example, this week she brought Janet some flowers to help cheer her up.

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One of the most common faith-based themes deals with the idea of waiting on God. However, in English, at least, the phrase “waiting on” can carry several different meanings. For example, in some usages it is a synonym for “serving,” as in: “I will be just a moment, I am waiting on another customer.” Occasionally this concept is used in a religious context to describe service to and for God. Interestingly, when considering the teachings of Jesus, the distinction between providing service to God and providing service for God, can get very fuzzy, especially when you consider the degree to which God identifies with the weak and powerless – as when he tells us, “As you have done to the least of these, so you do to me.”

Next, there is the idea of waiting on someone to provide an answer, such as God answering a prayer. We are often advised to pray and then wait on God to provide an answer. As an aside, we are told that God answers prayers by saying, “Yes,” “No,” or “Not now.” However, I have learned that other variations are possible, such as, “Yes, but…” Those are the tricky situations because like Cinderella we tend to hear the, “Yes you can go to the ball,” but miss the admonition or condition that follows.

Then finally, there is the sense in which Janet and our family are “waiting on” God. This type of waiting on isn’t primarily about service – though for those of us around Janet, there is that component. Likewise, we aren’t really waiting for a decision, because all the decisions to be made have been made. Rather, it feels like our task is simply waiting for the right time. But why is that waiting needed?

Well, in a world where we are alone and nothing we do or say impacts anyone else, there would be no need for this type of waiting. However, as you are no doubt aware, that is not the world we live in. Rather, we live in a world of unimaginable complexity. In the secular realm, this complexity is why governmental centralized planning has never worked well, regardless of how many times it has been tried, and it is why the phrase “unintended consequences” is now a standard part of the modern political lexicon.

An interesting movie that played with this idea of interconnectedness and the importance of timing, was a 1998 German film named Lola rennt, or for its English release Run, Lola, Run. The plot is really pretty simple: Lola gets a panicked phone call from her boyfriend Manni, who has just lost a bag full of money that belongs to the mob. If Lola can’t replace it in 20 minutes he will probably be killed. Because she has no car, she has to run across town (in this case, Berlin) and come up with a scheme for obtaining the money.

In a series of real-life instant replays, Lola tries three separate times using different ploys to get the money and obtained from the first two attempts different (unpleasant) results. On the third try, she finally gets the money, only to discover that it wasn’t really needed after all. However, for me, the most interesting part was how along the way she encounters the same people over and over again. Although the timing of their encounters varies by no more than a few seconds, the encounters produce dramatically different results in the lives of the people involved.

The obvious point of the movie is to highlight the chaotic nature of life and the unimaginable complexities of all the possible interactions between people and events. That much of the movie, at least, I can agree with. Unfortunately, the larger framework of the picture ends up being profoundly nihilistic in that the ultimate message is that all of life is left up to random chance. While the main characters (Lola and Manni) end up having what might be called a happy ending, the underlying message is despair masquerading as irony, because they just happened to be lucky – this time.

In that view of the world, the complexity of life results in despair because there is no one who sees the big picture, no one has a plan, and no one has their hands on the control levers. In point of fact, in that view of the world, there isn’t even any reasonable explanation for why the complexity even exists in the first place. In that view of the world, Janet and all the people like her are simply written off as unimportant because no one has a real answer to the question, “Why am I still here?” – let alone really hard questions like, “Why are any of us here?”

However, there is an answer that explains the complexity of the world, and which gives meaning to Janet’s life – and your life too. This answer has such power because it starts with the Creator God’s bold declaration at the birth of the universe that all of creation has value and meaning. We can know this because in Genesis 1, at the end of each creative step, the Creator God proclaims that each part of creation “is good” – an idea that the psalmist echoes over and over again in his glorification of God’s handiwork. The one exception, of course, is the creation of human beings, which He describes as, “very good.”

With that truth as the context for life, meaning and value are always available, because it recasts the hurt, pain, and brokenness of life in terms of renewing and restoring the goodness that was in the world originally, but was lost and is now being recovered through the faithful actions of believers. In this context, my wife – indeed all human life – is of infinite value regardless of age or circumstances because God has declared it to be so. Likewise, our service to others becomes a monument to truth and fidelity in a world that is sorely lacking in both.

In Christ, Amen ☩

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A prayer for when you are wondering why…

“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 how Your nature defines reality for us. Thank You also for not being silent, but speaking out to the world. Thank you for a reality that is plain and open, and not hidden behind esoteric masks. Amen.”

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Momentary Clarity

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 has been a time for clarity – though sometimes it has been a shrouded clarity. Confused? Well, let me explain.

For some reason, Janet has always had a special place in her heart for my daughter Catherine from a previous marriage. This concern was most commonly expressed in Janet’s desire for me to be in regular contact with her. We started with weekly phone calls, and now we often talk a couple of times a day via video calls. Consequently, my grandson, due in large part to my beard, actually believes that his grandfather is Santa Claus.

The depth of Janet’s concern for Catherine only became apparent this week. Lately, Janet’s perseveration has been being expressing itself in the form of a check list of concerns that she feels compelled to constantly re-verify to ensure that everything is organized for her end-of-life:

Life Insurance?   ✓ Check

Wills?   ✓ Check

Body Donation?   ✓ Check

After these standard items, she always runs through the family (including the dogs) to make sure that we are OK. However, a couple days ago, she changed the family list by asking, “…how are the girls doing?” Wait! We only have one daughter.

“The girls?” I asked.

“Yes, Frannie and Catherine,” she replied.

“Oh, they’re fine,” I said.

I have to admit that I was initially confused, but then I got to thinking that, viewed in a broader context, this “mistake” actually made a lot of sense. Janet has always cared about Catherine, though at times the emotional issues associated with HD got in the way of their being really close. Looking back, I think that emotionally Janet had a hard time saying what she felt, and this is how it is coming out now – clarified by Janet including her as a daughter for which she is concerned.

When a loved one with dementia says something you don’t understand, the immediate (and very human) reaction is to try to correct them. But this situation reminds me that to them, there may not be anything to correct. To them, the logic is perfectly clear and there is much that we can learn by restraining our urge to fix their perceptions, and simply hear what they are saying.

In other news, Janet’s weight continues to drop, and for the first time, she has slept for 24 hours straight – which did not help the weight issue. At the end of her long slumber, Janet seemed much better, so I guess she was just getting caught up. We have also gotten a new air mattress for the hospital bed to help with the problem of bed sores.

Janet is now going through periods where she doesn’t want anything to eat, and then suddenly will eat a lot all at once. Continuing a trend, she particularly likes anything that Frannie cooks for us, but I have to be careful to cut up whatever we are having into VERY small pieces. Janet is also asking for more personal contact like sitting and holding hands, saying “I love you” and the three of us praying together. The thing that breaks my heart, though, is that she is also apologizing more and more for being sick – like she has any control over it!

Something that I have often heard is that the one thing that never leaves is the anger. Well, for Janet at least, that is not the case – and I am very thankful.

Finally, I’m going to have to talk to the home hospice agency this coming week. Simply put, my back is giving out. I was diagnosed several years ago with sciatica and even using the proper techniques for moving and working with Janet that the CNA taught me, I still go to bed every night with an aching back.

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Something that seems to be coming up a lot these days is the concept of “value.”

I saw this cartoon months ago and the artist graciously gave me permission to use it here. As a good four-panel cartoon should, the first three panels set us up for what we are sure will be a warm and fuzzy ending, only to have the fourth frame jerk the ethical/moral rug from beneath our feet.

In terms of its ultimate message, this cartoon reminds me of a joke I heard several years ago about two men who were stranded on your prototypical desert isle – you know the kind: small mound of sand sticking up out of the water with nothing on it but one palm tree. One man (the pragmatist) tries to explain to the other one how dire their situation is: no food, no water, not even any shelter. But as each problem is presented, the other man simply says, “Don’t worry, I make ten million dollars a year.” Finally, the pragmatist yells, “You don’t understand! We are going to die!” To which the other fellow (who it turns out is also a pragmatist) replies, “No, you don’t understand. I make ten million dollars a year and I tithe. My pastor will find me.”

But all kidding aside, what does it mean to be of value? For as long as there have been legal systems, liability laws have had to wrestle with this problem: How do you put a price tag on something that is essentially priceless? How do you compensate a widow for the loss of her husband from (for example) an industrial accident? Obviously, there is no way to make her, in the legal sense, whole. So the law got as close as it could to a just answer and invented complex procedures to calculate such things as a lifetime of lost wages, with perhaps a bit added in for “mental duress” or “loss of companionship.”

Unfortunately, over time, society has come to believe that these calculated funny numbers really are the value of a human being. As caregivers, this is a critical issue because around the world, politicians and bureaucrats are beginning to openly question whether keeping certain people alive is worth the cost to society to do so. By the way, who do you think will be the ones to not “make the cut”? Certainly, the incurably ill and those past their wage earning years. While this attitude isn’t exactly the same as the one that drove the creation of gas chambers and mass crematoriums, it is without a doubt close.

So we must ask ourselves, what if the person whose value is being questioned is my spouse, or parent – or in a few years, even me? Suddenly this question is not at all abstract or academic. We have gone beyond actuarial tables and statistics to talk about real flesh-and-blood people – you know, the ones that the politicians like to forget.

What is disheartening for me is that I can remember a time when this question wasn’t even asked because the universal assumption was that human life is of value, all the time – not just when it is useful or convenient or wanted. Now even infanticide is on the table.

The root problem, as I discussed last week, is that only people of faith have the vision needed to see the interconnectedness that demonstrates the value of all human life. Without a perspective larger than ourselves, there is no basis for assigning worth or value to human life, and the resulting philosophy will be based largely on personal greed or authoritarianism.

Next, before closing, the passing of Justice Ginsburg has resulted in a flurry of breathless posts trying to shame people for saying things such as “Rest in Peace” or “She’s in a better place now.” Their point is that since she was Jewish, we shouldn’t be “polluting” her memory with such Christian concepts. The problem is that neither of these ideas are exclusively – or even originally – Christian. While it is true that Christians believe in (and in fact, are counting on) both of these ideas, they were also exceedingly common among the early founders of the faith who were predominantly Jewish, as well as modern day Judaism.

Finally, I know that post is relatively short, but this is a strange time in our household. I have spent many hours in tears and caring for Janet and Frannie.

In Christ, Amen ☩

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A prayer for when you are exhausted and hurting…

“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 everyday strength that you give. But today I want to bless You especially for the special strength and reassurance you provide to care for us in times of extraordinary trials. Thank you for the knowledge that darkness is always the precursor to light. Amen.”